Podcasts about national hemophilia foundation

Join host Emily Walsh Martin and guest Brendan Hayes, senior director of education and innovative therapies at the National Bleeding Disorders Foundation, formerly known as the National Hemophilia Foundation. for an illuminating conversation about trust, innovation, and the power of patient advocacy in advancing cell and gene therapies. Together, they dive into how patient communities shape the development of new therapies, the historical context that influences decision-making in clinical trials, and the unique considerations facing those who might choose to pursue cell and gene therapies. You can also hear Brendan in a panel discussion titled The Journey from Early-stage Trials to Approval at ASGCT’s Empowering Patients 2025: A Cell and Gene Therapies Summit. Hosted live on March 12 and 13, you can register for this free, patient-centered virtual event by visiting ASGCT.org/EP2025. Music by: https://www.steven-obrien.net/--------------------------Bright New Morning - Steven O'Brien (Used for free under a Creative Commons Attribution 4.0 License: https://creativecommons.org/licenses/by/4.0/)Show your support for ASGCT!: https://asgct.org/membership/donateSee omnystudio.com/listener for privacy information.

The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don't miss this one! Show Notes: Subscribe: The BloodStream Podcast   You can do three practical things to help further the campaign for better treatment for women with bleeding disorders:    1) sign the petition at change.org: Demand Equity in Healthcare for Women 2) Head over to CHES to submit your recommendations for good doctors and hospitals  3) Sign the 'MASAC Document 264' recommendations at hemophilia.org   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

ONCE UPON A GENE - EPISODE 180 Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael Wes Michael is the Founder of Rare Patient Voice, which connects families and caregivers of rare and non-rare diseases with opportunities to share their stories and their opinions with companies and researchers by participating in all types of studies— surveys, phone interviews, bulletin boards, focus groups, clinical trials, and more.  EPISODE HIGHLIGHTS Can you tell our friends listening a little about what you do?  I started a company called Rare Patient Voice almost 10 years ago now. What we do is  invite patients and caregivers to take part in studies, phone or Zoom interviews, online surveys, or online focus groups for our clients, who typically are working on behalf of the pharma companies, device companies or academics. They want to know what patients are thinking and patients are compensated for their participation, currently at a rate of $100 / hour. We go out to patient events, walks, conferences and fundraisers and invite them to join. When we get a request that matches their condition or disease  category, we'll send them an email and we serve as the matchmaker.  What inspired you to start Rare Patient Voice?  My background was not in healthcare. I was involved in market research for Wheaties and Cheerios. But then I moved into the healthcare field 30 or so years ago, and I was very excited because companies there were just learning to talk to patients. They started advertising drugs directly to the patients on TV. We were contacted by a company that was in the rare disease space— they worked in hemophilia. They explained there were very few patients, but they were very important to them and they wanted to learn from them through surveys and interviews. We were asked to build a panel, so we went to the National Hemophilia Foundation, had a booth and table, we talked to people and asked if they were interested in sharing their opinions. A couple years later, we were approached by a different company that also worked in hemophilia and they also wanted to access the patient panel. It got me thinking about creating a group of people that could be invited to studies for numerous companies and include different conditions and diseases. Now we represent 750+ diseases.  Do you help guide patients and caregivers from the beginning to help them tell their story?  Our clients are the moderators and they'll prep people and make sure they're comfortable. To prepare for an interview, you just bring your opinions. You don't have to do any special studying or research. The key is to be honest because you don't have to impress anybody. They just want to know the truth.  How can listeners sign up? People can sign up on the website by providing specific information which is kept confidential. They'll get a double opt-in email and it's as simple as that. LINKS & RESOURCES MENTIONED Rare Patient Voice Website https://rarepatientvoice.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Interested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!

Esme Vazquez found her calling in life through her work in occupational therapy. She believes having Glanzmann's Thrombasthenia helps her empathize and better care for the children she works with. Advocating for her patients became a passion that spilled over into her personal life and fueled her drive to advocate for the voiceless in her world of ultra-rare bleeding disorders.In a short time, she has become a champion for those underserved and is making waves in the national bleeding disorder community. She now works with the National Hemophilia Foundation on the National Research Blueprint to correct those gaps in patient care.Community Voices in Research Want to Sponsor the Podcast? Contact Us Here Have GT? Join Our Support Group Visit Our Website

"Shared decision making" has quickly become the new phrase bandied about at event and conferences within the haemophilia community. But what does shared decision making in haemophilia and bleeding disorders really look like? In this episode, our host Dr Kate Khair deep dives in to this topic with Dr Len Valentino, CEO at the National Hemophilia Foundation (USA), exploring what shared decision making really means in this community and why, in this evolving treatment landscape, this is drawing so much focus and attention. There is a need to shift away from the paternalistic healthcare professional and patient relationship, and to engage patients in a dialogue about their treatment, care and goals. This is at the heart of shared decision making. If you enjoyed this episode, please do share it with your peers and colleagues, and consider leaving a rating or review wherever you listen to your podcasts. You can also connect with us on Twitter! We'd like to hear your thoughts around the topic of shared decision making. Check out NHF's Blue Sky Vision: Community Conversation here.

2:09 Labiotech.eu news4:16 BIO-Europe (biosaxony)13:54 BIO-Europe (EBD Group EU)28:25 National Hemophilia Foundation44:40 JLLThis week, we have three interviews. Our guests are: Pam Putz, managing director of EBD Group EU; André Hofmann, CEO of biosaxony; and Kevin Mills, chief scientific officer at the National Hemophilia Foundation and Teri Willey, managing director of the National Hemophilia Foundation's Pathway to Cures. We also have our weekly chat with global commercial real estate services company JLL, with Travis McCready. BIO-Europe set to start in LeipzigBIO-Europe is returning with a three day in-person event, followed by a three-day virtual option.Taking place at the Leipzig Messe in Leipzig, Germany, from October 24 to 26, there is also an option for those who can't make it to attend virtually from November 2 to 4.BIO-Europe includes exhibitors, face-to-face partnering meetings, presentations, and a start-up spotlight. More than 4,000 attendees are expected in Germany, with more than 2,200 companies from 60 countries represented. More than 27,000 partnering meetings are anticipated over the three days.For more details on attending BIO-Europe, click here. There is still an option to attend and save €200 by booking before October 14.National Hemophilia Foundation launches research fundThe National Hemophilia Foundation (NHF) in the U.S. has announced the launch of Pathway to Cures (P2C), a new venture philanthropy investment fund focused on creating transformational impact across all inheritable blood disorders. Investing alongside and partnering with traditional private capital funds and other industry organizations, P2C hopes to spur the development of inheritable blood disorder therapies, treatments, and technologies, changing the lives of the inheritable blood disorders community. P2C is being launched as an open-ended fund with an initial $3.5 million commitment from the NHF as it begins fundraising and partnership outreach to raise $20 million over the next several years as it invests in companies that demonstrate significant potential for transformational impact for the inheritable blood disorders community.

 Techstination, your destination for gadgets and gear.   I'm Fred Fishkin.       Pathway to Cures is the name of a new venture philanthropy fund that is focused on providing backing to discover solutions to inherited blood disorders.    The National Hemophilia Foundation is the parent organization…where...

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream's Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation's Bleeding Disorders Conference as well as the latest from the Let's Talk mental health segment. Plus, news from ICER on gene therapy!   Show Notes: Subscribe: The BloodStream Podcast   Article: Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement    Presenting Sponsor: - Takeda, visit bleedingdisorders.com to learn more.   Episode and Segment Sponsors: - CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia's history - Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community. - Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

On this episode, Executive Producer of the Global Hemophilia Report, Patrick James Lynch, is joined in person by Senior Advisor, Dr. Donna DiMichele, and Writer/Host, Laurence Woollard, to reflect on Season 1 so far as well as debate existing and emerging research priorities from each episode. Contributors: Patrick James Lynch Laurence Woollard Donna DiMichele, MD   Senior Advisor: Donna DiMichele, MD   Links to Learn More: Episode 1 - Inhibitors: Prevention, Eradication & Lived Experiences Episode 2 - Novel Therapies: Entering Uncharted Territory Episode 3 - Prophylaxis: Protection, Achievements & Shortcomings Episode 4 - Bone & Joint Health: Monitoring & Detection Episode 5 - Mental Health & Hemophilia in Adolescence & Young Adulthood Episode 6 - Women with Hemophilia: Research Priorities   Show Notes: Recorded in person at the National Hemophilia Foundation's Bleeding Disorders Conference on August 26th, 2022 in Houston, Texas, US.  Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Welcome to another engaging and informative episode of Data Gurus! Today, Sima is happy to have Wes Michael, the Founder and President of Rare Patient Voice, joining her! Wes founded Rare Patient Voice in 2013 to give patients and caregivers with rare diseases the opportunity to voice their opinions in research studies. In this episode, he explains what prompted him to start Rare Patient Voice. He also talks about how he has grown the business and what they do. Wes's story After graduating, Wes worked for a computer consulting company that did surveys. Then he returned to school to get an MBA and learn about statistics. After that, he worked at General Mills for a few years and learned about market research. He then moved to McCormick, a spice company in Maryland. A big change There was a change in the healthcare world in the nineties when direct-to-consumer ads were made legal. Wes moved into that world when he joined Kantar Health (then known as Migliara/Kaplan). He dealt with companies like Merck, Pfizer, and BMS, which knew everything about marketing to physicians but nothing about TV advertising to mass markets. Wes found it interesting to see those companies move from doing physician research only to doing patient research. Rare diseases One of Wes's first clients was one of the few thousand people in the entire country in the hemophilia space. That company asked Wes to create a panel to help market their hemophiliac treatment product. The National Hemophilia Foundation Conference  Wes went to the National Hemophilia Foundation conference and explained market research. People signed up to do interviews and surveys. After that, they went back every year to recruit more people. A business idea  A few years later, a client from a different pharmaceutical company in the hemophilia space asked Wes if they could access his patient panel. That gave Wes the idea to create a panel of people with hemophilia and other diseases and start a business to make it available to multiple companies. Rare Patient Voice  When Wes founded his Company, Rare Patient Voice, nine years ago, he started working with the hemophiliac community. He looked at other areas of interest, like multiple sclerosis, later. Referral bonus Patients know other patients. So Wes started offering a referral bonus to people who referred others to do his surveys. Cancer patients Wes did not want to work with cancer patients initially. However, after being inundated with requests from cancer patients, he started working together with David Wasilewski, the creator of WhatNext.com, the social health website of the American Cancer Society. It was a win-win situation for both of them, and it got Wes started with multiple diseases. Hiring more people As the demand increased, Wes hired more people. Then an MS patient from Colorado offered to help and started creating patient events in Colorado. After a while, Wes had fifty people from around the country going to patient events and spreading the word. That eventually became a source of full-time employees. Advocacy groups Many advocacy groups have partnered with Rare Patient Voice. Competition They are competitive and like to win. Even so, Wes likes to think that there are no losers. Some of their competitors are also their clients because even though they have panels, they still don't have enough to achieve what Rare Patient Voice has done. Patients With every survey, patients get the chance to give some feedback. Wes loves to read out their comments in their monthly meetings. Referral pay-outs Since its inception, Rare Patient Voice has paid more than $9,000,000 for referrals! Other research firms Most of the work Rare Patient Voice does is with other research firms. They are also happy to deal directly with pharma companies, but those companies usually prefer to have a firewall between themselves and the patients.

Welcome to the Three Part Series of Diagnosis Vs. Defeat: Speaking with special guests about their medical diagnosis, their strength to discover treatment & not accepting defeat as the answer. This episode discusses hemophilia factor 8 in children, finding the answer with a diagnosis, treatment, motherhood & all in between!Sponsor: MomsFashionAttic (Instagram: virginiaanne5)Special Guest: Kaitlin Bartholomew (TT: kaitlinmarie788/IG: Kaitlin.marie19)Hemophilia Mothers Facebook: (https://www.facebook.com/groups/1953376031578481/)National Hemophilia Foundation for Bleeding Disorders: (https://www.hemophilia.org/bleeding-disorders-a-z/types/hemophilia-a)

Host: Jennifer Caudle, DO Guest: Leonard A Valentino, MD Unfortunately, recognizing and diagnosing patients with bleeding disorders is only the first of many challenges. Once a diagnosis is reached, patients may face a variety of chronic health challenges and even altered family dynamics. Fortunately, recent treatments and developments—and even those on the horizon—can help alleviate the burden of bleeding disorders on patients and their loved ones. Join Dr. Jennifer Caudle as she uncovers those important efforts with Dr. Leonard Valentino, President and Chief Executive Officer at the National Hemophilia Foundation.

Many patients living in rural America encounter unique boundaries to receiving the critical healthcare they need, particularly when faced with a rare disorder or disease. March is Bleeding Disorders Awareness Month, and Dr. Len Valentino is working to educate and advocate for upwards of 10,000 rural Americans living with a rare blood or bleeding disorder. “Understanding rural health is critical to serving the population of the US.” ~Dr. Len Valentino As CEO of the National Hemophilia Foundation, Dr. Valentino brings more than 35 years of clinical and research experience related to inheritable blood disorders to the organization. Prior to his most recent work with Spark Therapeutics, a biotech startup, he founded and led the Hemophilia and Thrombophilia Center at Rush University Medical Center in Chicago, where he successfully balanced a $10 million budget to support research grants, research, and clinical teams–keeping the patient and their families as his core focus. He earned his undergraduate and medical degrees from Creighton University and Creighton University School of Medicine.  He then completed the University of Illinois at Chicago's Pediatric Medicine Residency before completing a fellowship in pediatric hematology-oncology at the David Geffen School of Medicine at UCLA. Dr. Valentino remains an active member of multiple professional organizations, including The American Society of Hematology; International Society of Thrombosis and Hemostasis; Medical Affairs Professional Society; and The Hemophilia and Thrombosis Research Society To learn more, check out www.hemophelia.org

Vice President of Equity and Innovation at the Institute for Child Success (ICS), Mary C. Garvey, joins us for an important conversation discussing the adultification of black girls. Mary is a native New Yorker who is passionate about building equitable systems and fostering social justice through policy. At ICS, an early childhood research and applied policy organization, Mary leads the organization's impact investing portfolio and advises on strategies that are in line with the principles of equity, inclusion, and anti-racism. Mary has led more than a dozen presentations and trainings on the implicit bias inherent in preschool suspension and expulsion, the danger in the adultification of Black girls, and other barriers to achieving equity in early childhood and beyond. The National Academy of Public Administration (NAPA), the South Carolina Summit on Early Childhood, and Clemson University are among those who have invited her to speak. Prior to ICS, Mary worked for National Hemophilia Foundation and PeerForward (formerly College Summit). She has also consulted on projects focused on housing policy, day care compliance, and breakfast in the classroom. Tune in on Wednesday, February 16 @ 6pm EST!

Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link The National Hemophilia Foundation: Link Hemophilia Federation of America: Link Our Segment this month is made possible by Genentech Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

During last month's Bleeding Disorders Conference, Believe Limited's Science Fair  hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.   Show Notes: PRESENTING SPONSOR: Takeda SCIENCE FAIR SPONSOR: Spark Therapeutics Register for NHF's State of the Science Research Summit NHF Education on Rare Bleeding Disorders Emicizumab PUPs and Nuwiq ITI Study VISIT The Science Fair SUBSCRIBE to BloodStream on Apple Podcasts CHECK OUT all our stuff

Patrick and guest co-host Mel Forrest welcome on members of National Hemophilia Foundation's staff to preview the community's biggest annual meeting of the year.  Show Notes: PRESENTING SPONSOR: Takeda  EPISODE SPONSOR: MyFactorFam.com REGISTER for BDC: https://bit.ly/3jT9SdJ CHECK out BDC Interactive program: https://bit.ly/3iJEcIJ LISTEN to The Pain Podcast SUBSCRIBE to BloodStream on Apple Podcasts CHECK out all our stuff  

Returning guest, Dr. Amy Shapiro, MD, Medical Director and CEO at the Indiana Hemophilia & Thrombosis Center and a member of the National Hemophilia Program Coordinating Center (NHPCC) Steering Committee discusses how they are facing the health challenges faced by the bleeding disorders community as outlined in Healthy People 2030 (HP2030) an initiative that addresses the latest public health priorities. Despite being rare, bleeding disorders were recently named one of the most pressing public health issues in the U.S., alongside conditions such as cancer, diabetes, and heart disease through HP2030. Amy Shapiro, MD, is Medical Director and CEO of the Indiana Hemophilia and Thrombosis Center in Indianapolis and Adjunct Senior Investigator, Clinical Track at the Blood Research Institute in Milwaukee, WI. After receiving her medical training at New York University School of Medicine in New York City, Dr. Shapiro completed her pediatric internship, residency, and fellowship in pediatric hematology/oncology at the University of Colorado Health Sciences Center in Denver. Author or co-author of more than 320 journal articles, abstracts, and textbook chapters, Dr. Shapiro is clinically focused on improving treatment for people with rare bleeding disorders. She has served on the National Hemophilia Foundation's Medical and Scientific Advisory Council and as well as several boards for the National Institutes of Health in Data Safety Monitoring and Clinical Trial Review. Dr. Shapiro currently serves on the FDA Blood Products Advisory Committee. As one of the founders of the American Thrombosis and Hemostasis Network (ATHN), she has served as Co-Chairman of the Board of Directors and remains active on various ATHN committees. Dr. Shapiro has been honored as the National Hemophilia Foundation Physician of the Year Award and most recently received their Leadership in Research Award. Among other accomplishments, she has also received the Distinguished Hoosier Award in Indiana. #BleedingDisordersAwareness

Long-time physician and advocate of our community, NHF CEO, Dr. Len Valentino shares what this month of awareness means to him and what we can expect from the National Hemophilia Foundation in the months and years to come. We hope you felt celebrated and inspired during this month of awareness. From all of us at Bloodstream, we loved being with you during Bleeding Disorders Awareness Month!   Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/   

Earlier this year, clinical practice guidelines for the diagnosis and management of von Willebrand disease (VWD) were published in Blood Advances. The guidelines (https://bit.ly/2OIfKLE) are a collaborative effort from the American Society of Hematology, the International Society on Thrombosis and Haemostasis, the National Hemophilia Foundation, and the World Federation of Hemophilia. Guideline author Paula James, MD, of Queens University, Kingston, Ont., reviews some of the recommendations in these guidelines with host David H. Henry, MD, in this episode. Case discussion A patient presents with the complaint of heavy menstrual bleeding, which could indicate a bleeding disorder such as VWD. How does one diagnose or rule out VWD? Tests to order include CBC, prothrombin time (PT), and partial thromboplastin time (PTT). Results of CBC, PT, and PTT could be normal, which would necessitate special testing to specifically look at factor VIII and von Willebrand factor (VWF). A patient’s family history may be helpful, as most types of VWD are autosomal dominant, though two subtypes are recessive. Diagnostic evaluation of VWD VWF is the chaperone protein for factor VIII in the intrinsic pathway, which is measured by the PTT. In more severe forms of VWD, the PTT is prolonged because of factor VIII. VWF is measured separately because it is not reflected in the PT or PTT. The recommendation is to measure VWF antigen and employ a functional assay to see how well VWF binds platelets. The recommendation in the new guidelines is to use the GPIbM assay rather than the ristocetin cofactor assay. Many labs in the United States are still using the ristocetin cofactor assay. However, in Canada, Europe, and other parts of the world, many labs have moved to a newer assay that is automated. It has a much lower coefficient of variation and fewer issues with measurement of VWF in Black populations, which is a major issue with the cofactor assay. Types of VWD Type 1 VWD is characterized by a decreased amount of VWF. Type 1 patients have low VWF antigen and low platelet-dependent VWF function to a similar degree, with low or normal factor VIII. Type 2 VWD is characterized by aberrant VWF. The functional assay is a lot lower than VWF antigen. The platelet-dependent function to VWF antigen ratio cutoff is 0.7. Further testing is warranted to determine subtypes (2A, 2B, 2N, or 2M), including VWF multimers. Genetic testing can be helpful to further delineate subtypes. Type 3 VWD is characterized by the absence of VWF. The patient will have a VWF antigen level of 0, platelet-dependent VWF function of 0, and a reduced factor VIII level (usually less than 10%). Pregnant patients with VWD There is a protective adaptation in pregnancy, in which factors normalize in the third trimester, which works to prevent hemorrhage at delivery. This protective effect is because of the hormonal changes of pregnancy, and it is seen in patients with milder forms of VWD. WVF levels peak within 8-24 hours after delivery and then slowly return to baseline. There is a risk of delayed postpartum hemorrhage once VWF levels return to baseline, which tends to happen 7-14 days postpartum. Procedural planning: Desmopressin challenge test Desmopressin causes the release of VWF from the Weibel-Palade bodies of the endothelium, and it can be used as prophylaxis or treatment of bleeding in type 1 VWD. The desmopressin challenge test is used to check how the patient responds to desmopressin when well, to predict the patient’s response after an anticipated procedure. The test involves measuring VWF levels before desmopressin is given and at 1 hour, 2 hours, and 4 hours after desmopressin administration. The idea is to measure the magnitude of increase in VWF levels and observe how sustained that increase is to predict the patient’s response to desmopressin after future procedures. There is a subset of patients with type 1 VWD who have increased clearance of VWF that causes their decreased VWF levels. They may not have a sustained plateau in the VWF level after desmopressin, which emphasizes why testing as far as 4 hours after desmopressin administration is important. The dose of desmopressin given in this test is typically 0.3-0.4 mcg/kg. Recommendations for preprocedure prophylaxis for type 1 VWD Minor procedures (e.g., wisdom tooth extraction) The patient should receive an antifibrinolytic agent, such as tranexamic acid or aminocaproic acid, 2 hours before the procedure, followed by desmopressin 30-60 minutes prior to the procedure. After the procedure, the patient should continue to receive the antifibrinolytic agent for 3-4 days. Major procedures/surgeries (e.g., gallbladder removal) The guidelines do not recommend desmopressin for major procedures because patients need to be fluid-restricted for approximately 24 hours after administration because of the risk of hyponatremia. Desmopressin is a synthetic analog of vasopressin, which results in the accumulation of free water similarly to vasopressin. The guidelines do recommend giving VWF-containing concentrate to increase VWF and factor VIII to greater than 50% from baseline for at least 3 days. VWF concentrates can be given every 12 hours or as continuous intravenous infusions. Tranexamic acid should be given as an adjuvant both prior to the procedure and in the days following. Cryoprecipitate is not recommended because it can’t be virally inactivated.  Preprocedure prophylaxis in type 2 or 3 VWD Desmopressin does not work for most patients with type 2 or 3 VWD. So even for minor procedures, these patients will need to receive VWF concentrate coupled with antifibrinolytics. Show notes written by Sheila DeYoung, DO, a resident at Pennsylvania Hospital, Philadelphia. Disclosures Dr. Henry has no relevant disclosures. Dr. James disclosed relationships with Baxter/Baxalta/Shire, CSL Behring, Bayer, and Octapharma. *  *  * For more MDedge Podcasts, go to mdedge.com/podcasts Email the show: podcasts@mdedge.com Interact with us on Twitter: @MDedgehemonc David Henry on Twitter: @davidhenrymd

Join us for an interview with Dr. Glenn Pierce who gives a terrific overview on the purpose and value of MASAC, the Medical and Scientific Advisory Council. MASAC was created by the National Hemophilia Foundation in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. This committee plays a vital role in treatment, advocacy, and research into our communities. Join us to learn more about how MASAC can affect your life with a bleeding disorder.    Program Notes: Learn more about MASAC here: https://www.hemophilia.org/who-we-are/our-team/masac Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/ 

Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC   HERTZ on Cheat Codes: bit.ly/cheatcodespod PRESTON on Journeys: bit.ly/BloodStreamJourneys GENE THERAPY article: bit.ly/GTfactor   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20    

I am super excited to have Dr. Fiona Bethea and Jhon Velasco on the podcast to discuss bleeding disorders because I’ve never discussed this topic on the show and, in my experience, bleeding disorders are often overlooked underlying causes of heavy and long periods. Unfortunately, in more cases than not, women with these symptoms are offered a birth control pill or hormonal IUD to stop the heavy periods and long bouts of bleeding, without further investigation.   Dr. Fiona Bethea is a Health Scientist on the Bleeding Disorders Team in the Epidemiology and Surveillance Branch of the Division of Blood Disorders, Centers for Disease Control and Prevention (CDC), and Jhon Velasco is the Manager of Education and Training at National Hemophilia Foundation, where he focuses on women with bleeding disorders, the Spanish speaking community, and mental health.   Fiona and John are both part of the Better You Know campaign, developed by the National Hemophilia Foundation (NHF) in partnership with CDC, which focuses on women who may experience symptoms of a bleeding disorder but haven’t been diagnosed. The aim of the campaign is to raise awareness and knowledge of bleeding disorders and provide resources for women who seek care.   In this episode, we talk about common symptoms of bleeding disorders, how they affect the lives of women who have them, why they often go undiagnosed, the importance of early diagnosis and treatment, how the Better You Know campaign can help you learn more, and advocate for yourself or your daughter, what to expect from testing and treatment of bleeding disorders, and so much more!     To learn more about the Better You Know initiative, visit the show notes.

The Series Podcast Objectives are:  Understand how the medical affairs strategic planning process can drive decision making throughout the year  Gain insight into the value medical affairs bring across an organization when an effective, collaborative, aligned medical strategy plan is developed  Obtain a working knowledge of how cross-functional teams within medical affairs can reference strategic plans to inform decision making and assess impact of efforts  Monica DeAbadal, MD, MBA/HSA, Vice President, Medical Excellence at Ipsen and MAPS Medical Strategy & Launch Excellence co-lead, culled out highlights from the Medical Strategy Strategy Planning live session at the March 2020 Annual MAPS Conference.The session speakers who provided these critical intellectual components of Building the Medical Affairs Strategic Plan are: Peter Piliero, MD, Vice President & Head, Medical Affairs Americas at GSK Consumer Healthcare; Eileen K Sawyer, PhD, Vice-President, Global Medical Affairs, UniQure; Len Valentino, MD, President and CEO, National Hemophilia Foundation; and, Anna Walz, CEO of MedEvoke. 

Patrick, Amy, and Natalie share some announcements before Kollet Kouliaos, the National Hemophilia Foundation's Senior Director of Payer Relations, joins to discuss some recent and encouraging survey results regarding copays and out-of-pocket costs, then fresh off the Appalachian Trail, teen adventurer William Addison joins to tell us about his 2,200 mile hike benefitting Save One Life!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite SEGMENT SPONSOR: Genentech - https://bit.ly/2FZ7K3P   Check out Twitch Rivals: https://bit.ly/2ZXZRTx    Survey Results on Copay Assistance: http://bit.ly/CoPaySurvey SOBO for Save One Life: http://bit.ly/SOBO4SOL WFH’s new President, Caesar Garrido: http://bit.ly/WFHCesar   Check out the new podcast, Haunting Season: http://bit.ly/HSBSP20   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Patrick and Amy discuss the recently published, “100 Days Agenda: A Patient-First Blueprint” and are then joined by National Hemophilia Foundation’s Elizabeth Molnar to talk about the Unite For Bleeding Disorders walks! PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite 100 Days Agenda: A Patient-First Blueprint: http://bit.ly/100DaysPatientsFirst NHF’s Blue Sky Initiative: http://bit.ly/NHFBlue2020 Unite For Bleeding Disorders: http://bit.ly/UniteBD2020 Casting  for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Everyone has a story to tell. And sharing whatever creative content you have can make a huge difference, especially when your audience are people living with chronic illness. Storytelling can help people with chronic illness and rare diseases to move from a sad narrative to a more hopeful one where they can see themselves as people who have manageable chronic disease. In this episode, I’m joined by Patrick James Lynch, CEO of Believe LTD and host of Bloodstream Media. He shared with us how he and his team create engaging stories that positively impact people with chronic and rare disease, as well as his personal experience with loss and triumph, and his personal journey of living with severe hemophilia. Join me as we dive into how Patrick turned Believe LTD into a sustainable business and why they create content to make a difference in the world! Episode Highlights: Hobbies and activities that Patrick enjoys outside of his work at Believe LTD Patrick talks about his work at Believe LTD and their mission  Content is King: What it means and why? How Believe LTD is serving the community of hemophilia and other chronic rare diseases How Patrick turned Believe LTD into an actual and sustainable business Always keep the end-users in mind when doing business The most important thing to consider when creating authentic content About Our Guest: Patrick James Lynch is a filmmaker, media professional, and globally-recognized health advocate who has delivered more than 100 presentations, all around the world.  He's been recognized with the Hemophilia Federation of America's (HFA) Health & Wellness Award (2013), the National Hemophilia Foundation's (NHF) Meritorious Service Award (2014), was a featured speaker during World Federation of Hemophilia's (WFH) World Congress (2016, 2018), is an executive producer of Save One Life's 2020 content campaigns, has served as founding board president of the 501(c)(3) Entertainment 2 Affect Change since 2013, and since 2011 has been the CEO of Believe Limited. His work has been featured by Backstage, BuzzFeed, Forbes, Fox News, HemAware, Hemophilia News Today, HuffPo, PBS, Reuters, VoyageLA, and elsewhere. Film credits include documentaries sometimes, i think about dying (https://youtu.be/JTLBnjWbpBo) (EP, Sundance 2019, Oscars 2020 shortlist), and Ryan's Mom (producer/writer, in development w/ Jersey Films). Notable digital content includes the comedy web series "Hemophilia: The Musical (https://www.breakingthroughhemophilia.com/), an original 6-song musical, co-created with teen participants (original cast recording streamable on website!) Bleeding disorders programs of note include the arts workshop The Science Fair (http://thesciencefair.org/). Patrick can be seen as an actor in the Amazon Prime series patrickjameslynch.com (http://patrickjameslynch.com/). Links Supporting This Episode: Patrick James Lynch’s website: (https://www.believeltd.com/)  Patrick James Lynch’s Instagram: (https://www.instagram.com/patrickjameslynch/) Patrick James Lynch’s Twitter: (https://twitter.com/pjlync) Patrick James Lynch’s LinkedIn: (https://www.linkedin.com/in/believepatrick) Bombardierblood Trailer: (https://vimeo.com/293432617) Bombardier Blood website: (https://www.bombardierblood.com/) Bloodstream Podcast: (https://podcasts.apple.com/us/podcast/bloodstream/id1133574474) Support this podcast

 Patrick, Natalie, and Amy circle up to share highlights and personal takeaways from the National Hemophilia Foundation’s Virtual Bleeding Disorders Conference, which took place August 1st-8th via hemophilia.org. Listen in as the hosts recap some critical sessions, relive their favorite experiences, and share personal takeaways from #NHF2020! Presenting Sponsor: Takeda SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!  

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058    

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference going virtual this year, so join us for a can’t miss episode of Ask the Expert! Welcome to Episode 39 - or our Dr. Valentino Episode - of the Ask The Expert Podcast!  Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

Safety, Vigilance and New Frontiers (Episode 3, The Factor Revolution, originally published 10/2017) pulls together more interviews with advocacy and industry leaders, like Michelle Rice (Senior VP of External Affairs, National Hemophilia Foundation), Andy Slavitt (Former Obama Administration Medicare, Medicaid and ACA Overseer), and Dr. Steven Pipe (Director, Coagulation Laboratory, University of Michigan), who give incredible insight on the future of bleeding disorders treatments and access to care. This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood.   BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project."    Presenting Sponsor: Takeda Subscribe to and rate The BloodStream Podcast Subscribe to and rate The Ask The Expert Podcast Subscribe to and rate BloodStream Journeys Subscribe to and rate Cheat Codes: A Sickle Cell Podcast Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

Patrick shares his experience from National Hemophilia Foundation’s Washington Days (#NHFWD), complete with over a dozen community interviews, including one with NHF’s new CEO Dr. Len Valentino! NHF Washington Days Chinedu Felix Osuchukwu’s website and Instagram. Subscribe to and rate The BloodStream Podcast Subscribe to and rate The Ask The Expert Podcast Subscribe to and rate BloodStream Journeys Subscribe to and rate Cheat Codes: A Sickle Cell Podcast   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Check out Believe Limited’s Other Work: Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org  

As we begin the new year many of us are encouraged to follow through on goals we have set for ourselves, but the stress involved with sticking to it and following through can affect our mental and emotional well-being. Debbie de la Riva from Mental Health Matters Too stops by to share some things to keep in mind about creating actual habit and behavior change as we work towards our goals. As a community leader encouraging awareness and education around mental health, Debbie will also share what we can expect in 2020 and her growing partnership with Believe Limited and the National Hemophilia Foundation. Start your new year off right and join us for another terrific episode of Ask the Expert!   Welcome to Episode 35 - or our New Year’s Resolutions Watch-Out’s Episode - of the Ask The Expert Podcast!    Program Notes: Check out the following resources for more information: Mental Health Matters Too Website: http://mentalhealthmatterstoo.com/ Resource Guide: http://mentalhealthmatterstoo.com/resources/ The Power of Habit by Charles Duhigg  

von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community! Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast!  There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information: Foundation for Women & Girl with Blood Disorders http://www.fwgbd.org/ NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/ Victory for Women: https://victoryforwomen.org/ vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/ National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/   “An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D.   “vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D.   “vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D.   

As we enter into a new phase of hemophilia treatments and products, the questions continue to grow and become more complicated by the day. Check out the latest episode of Ask the Expert, where we welcome Dr. Michael Wang, M.D. from the University of Colorado Hemophilia and Thrombosis center to discuss the current status of revolutionary potential treatments like gene therapy and non-factor replacements. Dr. Wang answers listeners own questions about the clinical trial process, research updates, what the medical community is encouraged about, as well as concerns being raised. In this true paradigm shift in how we view hemophilia treatment, the only consistent message from all sides as been - educate yourself and keep asking questions. Join us for a can’t miss episode of Ask the Expert!   Welcome to Episode 33 - or our Paradigm Shift in Hemophilia Treatment Episode - of the Ask The Expert Podcast!  ‍ For the latest in clinical trial outcomes follow the National Hemophilia Foundation https://www.hemophilia.org/ ‍ “Strong gene therapy candidates are encouraged to have meticulous logging skills and the availability to be seen every week for a period of time.” Dr. Michael Wang, M.D.   “The future will be about individualized choice based on lifestyle and the type of protection you want in a treatment.” Dr. Michael Wang, M.D.   “We will begin to understand mild/moderate patients in depth going forward because of the treatment shift due to sheer volume.” Dr. Michael Wang, M.D. 

Are you considering board service with your local chapter or a national organization? Maybe you are currently serving on a board and know the unique struggle this volunteer position can face. Join us for a special Ask the Expert episode as we sit down with Jorge de la Riva, former board chair of The National Hemophilia Foundation. Jorge shares his personal views of the role of a board member and how serving your community in this way can be rewarding for you and your family. “The best way to find yourself is to lose yourself in the service of others” - Gandhi. Welcome to Episode 26 - or our The Value of Board Service Episode - of the Ask The Expert Podcast!     Follow the link below for continued resources on board service: https://boardsource.org/    “The best thing a new board member can do is listen.” “The Board Chair/President is there to serve the community and staff, while execited the will of the board.” “A solid working relationship between the CEO/executive director and the board chair is based on aligned values, transparency and clear directives from the board.” Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

Hemophilia used to plague the royal families of Europe who practiced inbreeding to "secure" family bloodlines. People still suffer from the blood disorder (not because of inbreeding) and Idaho Matters looks at the causes and cures with Barbara Fawcett, executive director of the Idaho chapter of the National Hemophilia Foundation.

  Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!   Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!     Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you    Follow the link below to read about specific data about copay accumulator benefit structures: https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html   Follow the link below for more information about copay accumulator adjustment programs: https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html   Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!   Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!    Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you    Follow the link below to read about specific data about copay accumulator benefit structures: https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html   Follow the link below for more information about copay accumulator adjustment programs: https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html   Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.  Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.    

In this episode of the Ask The Expert podcast, we interview Justin Levesque about the influence his bleeding disorder has had on his work as an artist, discuss how art can be used to express the challenges we face living with a bleeding disorder and how that unique experience can lead to powerful artwork. Justin also discusses his program “Blood Work”, an art exhibition of pieces created by individuals impacted by bleeding disorders at the National Hemophilia Foundation’s Annual Bleeding Disorders Conference.   Follow Justin: One Dynamic System https://onedynamicsystem.com/ Instagram @onedynamicsystem   Follow FOLX and enter your work into the next Blood Work exhibit here: https://www.folxfolx.org/   Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.  Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

This month on The BloodStream Podcast, Natalie records from the National Hemophilia Foundation’s 70th Annual Bleeding Disorders Conference, bringing highlights, small interviews and generally providing the flavor of this year’s annual meeting. In addition to conference coverage, this month we also hear from community member Ben Martin in our Share segment. All that and more on Episode 29 of The BloodStream Podcast!   Exclusive Sponsor: Shire   Latest Ask The Expert Podcast:  Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018 Latest Powering Through Podcast:  Ep. 21 - NorCal w/ Lauren Barbounis & Jeremy Dodson TeenImpactAwards.com   TeenImpactAwards.com   BombardierBlood.com   STBhemo.com (Stop The Bleeding!)   Leave us a review on iTunes!  Help others from BloodStream!   Welcome to the Club by Ben Martin   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, the National Hemophilia Foundation’s (NHF) CEO Val Bias and SVP Dawn Rotellini preview NHF’s 70th Annual Bleeding Disorders Conference taking place October 11th-13th in Orlando, Florida.  UK Haemophilia Society trustee Clive Smith shares his Ironman story, Natalie leads a discussion on wearables and health outcomes, and Patrick walks through the recent The Atlantic article on hemophilia and gene therapy titled: The Patients Who Don’t Want To Be Cured. All that and more on Episode 28 of The BloodStream Podcast! Exclusive Sponsor: Shire Believe @ #NHF2018: BelieveLTD.com/NHF2018 Latest Ask The Expert Podcast: Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018 Latest Powering Through Podcast: Ep. 20 - NEHA w/ Dr. Jonathan Bernstein, Dr. Stacy Croteau, Emily Bisson, & Caitlin Montcrieff CHECK IT OUT! TeenImpactAwards.com BombardierBlood.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream! Community News In 60 Seconds: 11-YEAR-OLD WITH RARE BLEEDING DISORDER BAKES ONE-OF-A-KIND CAKES FOR OTHER SICK KIDS Hemophilia Center of Western New York awards $890,000 grant to UB to address shortage of specialists in non-malignant blood disorder uniQure (QURE) Reports First Patient Treated in Dose-Confirmation Study of AMT-061 in Patients with Hemophilia B IDELVION® 3500 IU Vials Now Available to Provide Convenience to Patients Catalyst Biosciences Announces Publication of Marzeptacog Alfa (Activated) Phase 1 Data in The Journal of Thrombosis and Haemostasis Promising Data Supports Development of AAVhu37-based Gene Therapy for Hemophilia A   Like Segment: Fitness trackers turn health into a game that users rarely win ‘Beyond the Wrist: Rethinking Wearable Technology for Mental Health Share Segment: Clive Smith - Iron Out The Obstacles Comment Segment: The Patients Who Don’t Want To Be Cured Interview Segment: NHF CEO Val Bias and SVP Dawn Rotellini Preview NHF BDC 2018   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

In Part 3 of BloodLine’s Hemophilia and Young Adulthood Series - our final episode - eight members of the Hemophilia Association of New Jersey (HANJ) give their perspectives on DATING & INTIMACY, how hemophilia plays a role in a young adult’s FAMILY, and what they HOPE for the future of the hemophilia community. This conversation was recorded live on January 17th at the Madison Hotel in Morristown, New Jersey and was co-hosted by BloodStream Media’s Natalie and Patrick James Lynch. Series Sponsor: Shire. Visit bleedingdisorders.com to find useful tools and resources for managing life with a bleeding disorder. Patient Organization Partner: The Hemophilia Association of New Jersey (HANJ). Learn more about HANJ and their mission by visiting http://hanj.org. National Hemophilia Foundation’s Chapter Directory. Hemophilia Federation of America’s Member Organizations Search Platform.   BloodLine is a BloodStream Media podcast series featuring deep dives into the stories and topics that matter most to the bleeding disorders community. Subscribe to The BloodLine Podcast on iTunes (http://bit.ly/BloodLinePod) or visit BloodLinePod.com to stream or subscribe via links.  Find all of BloodStream Media’s podcasts for the bleeding disorders community by visiting BloodStreamMedia.com.  

We preview National Hemophilia Foundation’s (NHF) 2017 Annual Meeting! Interviews include NHF CEO Val Bias, NHF staff and volunteers. During our Like, Share, Comment segment, Natalie and I discuss a recent article profiling companies with notably strong employee health benefits, a World Federation of Hemophilia (WFH) article highlighting recent success in their Twinning Program, and community member Tai-yan Chou-Kudu  presents Hemophilia - Not Just Physical, a spoken-word piece on severe hemophilia A’s impact on her life and studies. All of that, plus a look at a new inquiry in the UK into the blood contamination crisis. Listen now on Episode 15 of The BloodStream Podcast! Exclusive Sponsor for Episode 15: Like Share Comment Like: Nine Companies Hiring Now That Cover 100% of Employee Health Insurance Premiums Share: Tai-yan Chou-Kudu’s “Hemophilia - Not Just Physical” (LINK TO BLOG) Comment: Twinning successes in 2016, Inquiry to contaminated blood scandal in UK Other Links of Interest Powering Through Podcast Ep 7 feat. four HTC hematologists: http://bit.ly/PTpodEp7 Ask The Expert Podcast:  http://BloodStreamExpert.com The Haemophilia Society’s Blog: http://haemophilia.org.uk/blog/ Outreach and Identification in Indonesia video from the World Federation of Hemophilia’s Humanitarian Aid Program: http://bit.ly/WFHIndonesia Believe @ #NHF2017 Video: VIDEO NOT YET AVAILABLE. Believe @ #NHF2017 Printed Schedule: http://BelieveLTD.com/NHF2017 https://www.hepmag.com/article/coffee-cannabis-may-protect-liver-hiv-hcv   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com  

In this episode, Dr. Steven Pipe, a pediatric hematologist out of the University of Michigan who is also the chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) discusses the major takeaways from the International Society of Thrombosis and Hemostasis’ (ISTH) 2017 Congress, which took place this July in Berlin, Germany. Dr. Pipe shares the latest updates on non-factor replacement therapies, gene therapy, and more on Episode 5 of BloodStream Media’s Ask The Expert podcast series! Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment. Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)   ISTH Congress 2017 Headlines: BioMarin and Spark: http://www.biopharmadive.com/news/hemophilia-ISTH-spark-alnylam-gene-therapy-biomarin/446849/ Idelvion: https://hemophilianewstoday.com/2017/07/14/hemophilia-b-pediatric-adult-patients-benefit-from-idelvion-studies-show/ Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors Nuwiq: http://www.businesswire.com/news/home/20170709005080/en/ISTH-2017-Berlin-Octapharma-presents-exciting-Nuwiq%C2%AE Q&A with R&D chief of Bioverativ: https://www.dddmag.com/article/2017/07/bioverativ-r-d-chief-breaks-down-data-blood-disorder-drug-pipeline Steven Pipe presents small molecule therapies: http://isthcongressdaily.org/novel-therapies-hemophilia-small-molecules-treatment-hemophilia/  

On this episode, Dr. Steven Pipe- pediatric hematologist and Chair of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council- provides an update on new and developing treatment products immediately following his attending the International Society on Thrombosis and Hemostasis (ISTH) Congress. Natalie leads a discussion on a recent CDC study that indicates opioid prescriptions are on the decline, Patrick initiates a game based on a new bleeding disorders online platform, and a community member shares her take on platelet disorders. All this and more on Episode 14 of The BloodStream Podcast!  Opioid Prescriptions Fall After 2010 Peak, C.D.C Report Finds https://www.nytimes.com/2017/07/06/health/opioid-painkillers-prescriptions-united-states.html Rare Platlet Disorders: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/types-of-bleeding-disorders/rare-platelet-disorders ISTH Congress 2017 Headlines: BioMarin and Spark: http://www.biopharmadive.com/news/hemophilia-ISTH-spark-alnylam-gene-therapy-biomarin/446849/    Idelvion: https://hemophilianewstoday.com/2017/07/14/hemophilia-b-pediatric-adult-patients-benefit-from-idelvion-studies-show/   Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors   Nuwiq: http://www.businesswire.com/news/home/20170709005080/en/ISTH-2017-Berlin-Octapharma-presents-exciting-Nuwiq%C2%AE Q&A with R&D chief of Bioverativ: https://www.dddmag.com/article/2017/07/bioverativ-r-d-chief-breaks-down-data-blood-disorder-drug-pipeline   Steven Pipe presents small molecule therapies: http://isthcongressdaily.org/novel-therapies-hemophilia-small-molecules-treatment-hemophilia/   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com  

You know how to take care of you. You just don’t do it. Right? There are so many reasons why - responsibilities, kids, business, family - there’s no end to the things that demand a piece of your time, a piece of you. It can easily feel like there’s no time left over to take care of yourself, but if you don’t figure it out you know that you’re going to crash eventually. Today’s guest is Rosetta’s friend, Aisha Moore an expert in self-care who teaches busy women like you how to care for themselves first so they can ensure that they have the energy to serve others at home and in their business. What Aisha has to share today could save your life, both figuratively and literally, so be sure you listen. What IS self-care and why is it important? When you think of self-care, what comes to mind? Is it a nice manicure or pedicure? Is it time alone, reading a book or enjoying your favorite drink? Those things definitely qualify as self-care but the concept and practice entail so much more than just those acts. Aisha Moore has learned the importance of self-care the hard way, experiencing her own health issues that pushed her to make some clear changes to the way she was living. Her story serves as both an example and an inspiration to women all over the world and you are sure to learn something as you listen to her tell about the transformation that the practice of self-care has had in her life. Your self-care needs to match what’s going on in your life. It’s impossible to take care of you by doing the exact things that other people do to take care of themselves. Each person is different and requires different things for the nurturing of their own soul. But there’s also the issue of what’s going on in your life. As the seasons of life come and go you will find that you need different self-care habits than you did before. On this episode, Aisha Moore shares how this phenomenon happens and how you can learn to be flexible and wise in the way you take care of yourself, so be sure you take the time to listen. You need to practice self-care every day to be your optimal self. Self-care is not something you should allow to be a hit and miss thing. You are not invulnerable. You are not free of the normal human weaknesses that we all fall prey to from time to time. But you can prevent much of the physical, emotional, and spiritual difficulties that threaten you by practicing self-care every day. On this episode, Aisha Moore shares a handful of ideas of how you can build self-care disciplines into your life on a daily basis. You’ll learn some fresh ideas for taking care of yourself that Aisha has seen help many others. You have to make some hard decisions to make self-care a priority. If you know you need to take care of you in order to be healthy you probably also know that you are going to have to make some tough decisions to ensure that it happens. You won’t stumble into self-care, you have to be intentional about it. On this episode, Aisha Moore tells Rosetta (and you) some great ways to set aside the time for self-care in your busy schedule and gives some ideas about how you can make the hard choices that are required if you are going to be your best self. Are you ready for the challenge? Listen to find out more. Outline of this great episode [0:31] Rosetta’s introduction of her guest, Aisha Moore. [1:34] The mission Aisha is on and how she’s accomplishing it. [3:20] How Aisha decided to focus on the area of self care. [8:28] The changes Aisha noticed in herself after undergoing a self care process. [11:02] What IS self care from Aisha’s perspective? [14:16] Specific action steps you can take to care for yourself better. [17:11] Aisha’s advice to women who feel they don’t have time for self care. [25:19] The decisions you have to make in order to make self care a priority. [29:45] A top book Aisha recommends. [32:33] How you can connect with Aisha. Resources & Links mentioned in this episode http://www.selfcarebyaisha.com/FreeGift - Aisha’s website (and get your FREE gift) www.HappyBlackWomanRetreat.com BOOK: The Artist’s Way The Daily Word BOOK: The Tao of Pooh About AISHA MOORE Aisha helps people identify what's stressing them out and helps them figure a plan to do something about it. Since 2014, Aisha has provided coaching and speaking services for individuals, nonprofits, businesses, associations, foundations, young professionals groups, colleges, universities and civic groups. She has worked in public health as a consultant and health educator for 15 years helping to make life better for others. She is featured in the Amazon Best Seller "Happy Healthy Nonprofits." She is the creator of the “Self-care Planning in 10 Steps” workbook and the “Self-care Bill of Rights.” Aisha has been featured on Beth Kanter’s Nonprofit Blog, MeditateThis! Podcast and the Get Your Mind Right Radio Show. Some of her past clients include the National Hemophilia Foundation and the Association of Black Psychologist.

In this episode, we take a look back at a historic summer that saw the National Hemophilia Foundation's (NHF) Annual Meeting and the World Federation of America's (WFH) World Congress convene in Orlando for the largest gathering ever of people with bleeding disorders. In addition to featuring some conference related content, our Like Share Comment segment highlight a story on Elijah Warren, a high school swimming star with hemophilia as well as a recent article from John Hopkins University on the power of humor in healthcare. Finally, we close this month's episode with a remembrance of Matt Stinger, a community member and advocate who passed unexpectedly this month at 33 years old. Headlines Novo Nordisk’s B-HERO-S study has found, to the surprise of some, that many patients with mild or moderate hemophilia B in the United States experience their condition negatively impacting their career, education, and recreational activities- something that can be overlooked in those affected by mild or moderate hemophilia as opposed to severe. Link. High schooler Federico Parres is one of five team members on the VEX Robotics World Championship Team F, responsible for creating Caerus-7, a ball-flinging robot. Federico lives with severe hemophilia A and plans on becoming an engineer one day. Link. Bayers’ Hemophilia Awards Program recently announced 16 physicians and researchers from 11 countries who will receives grant money totaling about two million dollars, including 6 individuals from the United States. This is the fourteenth year Bayer has run this program. Link A study published in the European journal Haematologica examines a new potential model for how to treatment patients with hemophilia A who undergo surgery. Something I personally find interesting given our ongoing need to learn more about aging with hemophilia. Link The FDA has approved a new needleless reconstitution device called Baxject III for Shire’s long-lasting factor FVIII therapy Adynovate. For those familiar, it is a very similar device to that which is found in Advate. Link Two medical advisory updates have been announced by the National Hemophilia Foundation regarding existing products: NHF Medical Advisory 419 (four-one-nine) states that Bayer has announced a voluntary recall of two lots of Kogenate FS for a loss of potency. The lot numbers are 270TN1C and 270R978. For more information or to arrange for an exchange please call the Recall Processing Center at 855-838-5782. Link And NHF Medical Advisory 420 (four-two-zero) states that CSL Behring has announced a voluntary recall of two lots of Helixate FS for a loss of potency. Those lot numbers are 270TN1G and 270R979. For more information or to arrange an exchange for these products, call CSL Behring’s Customer Service at 1800-683-1288. Link Product Related Headlines (not mentioned in the show) Genentech/Roche has released encouraging Phase 1/2 extension results for their investigational subcutaneous medicine, emicizumab-previously referred to as ACE910. Link The Netherlands-based uniQure, a company self-described as a leader in human gene therapy, announced encouraging clinical data from their ongoing Phase 1/2 trail of AMT-060, an investigational gene therapy for patients with hemophilia B. Link​ BioMarin has presented positive interim data from a Phase 1/2 clinical trial of BMN 270, an investigational gene therapy for people severe hemophilia A. The company has announced intent to begin another study with an eye toward regulatory approval in both the US and Europe. Link CSL Behring’s hemophilia B therapy Idelvion shows promise after encouraging Phase 3 trial results. Link The company also posted positive results from a Phase III study from its FDA approved, hemophilia A treatment AFSTYLA, unique for being the first and only single-chain recombinant product available in the US. Spark Therapeutics and Pfizer received Breakthrough Therapy Status from the FDA for expedited development of a hemophilia B gene therapy treatment SPK-9001. The treatment is currently also undergoing a Phase 1/2 clinical trial. Link. Alnylam Pharmaceuticals announced positive results of a Phase 1 trial for their subcutaneous therapy fitusiran, designed to treat patients with both hemophilia A and B, with or without inhibitors. Link. Like Share Comment Segment NHF Daily, a digital recap of Annual Meeting. Link WFH The Congress Daily. Link High school swimming star Elijah Warren. Link John Hopkins University article on therapeutic humor. Link BloodStream on Social BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram.

Coming out of a wild weekend in Chicago, I share my experience at the National Hemophilia Foundation's annual conference & talk about the success of the event I was flown in to host. I share the story of my surprisingly cool flight to Chicago, oh, and I leave some time at the end for a throwback conversation with tech nerd, friend, and rising star of the hemophilia community, Michael Schultz.