Ask The Expert - A BloodStream Media Podcast

Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert interviews, because they’re not going away! Listen in with Patrick and Amy as they share the new and exciting things coming from Bloodstream Media! Welcome to Episode 40, or To the Future! The final episode of the Ask The Expert Podcast!    Check out all the podcast offerings from Bloodstream Media: https://www.bloodstreammedia.com/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

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  

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 of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask the Expert! Welcome to Episode 38 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going forward and how increased communication with NHF sets both organizations up for success. Join us for another great episode of Ask the Expert! Welcome to Episode 38 - or our Meet Sharon Meyers Episode - of the Ask The Expert Podcast!  Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isolated from his friends. How did he manage and why did he think it was important for other teens to share their story? Check out this great episode and if you know an amazing teen affected by a bleeding disorder doing incredible things for their community, nominate them for the Teen Impact Award at www.teenimpactawards.com  Welcome to Episode 37 Part 2- or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/  

So much of our community programming and education is focused around teenagers and yet oftentimes our teenagers seem like mysteries to us. What is it like being a teen with a bleeding disorder and what would make their lives easier? To celebrate Bleeding Disorders Awareness Month we asked teen, Brian Ragaishis, to join us on Ask the Expert to share why he created Live Smart, Play Smart, a website that creates community for other teens affected by bleeding disorders by telling their story. Brian, a former Teen Impact Award winner, joins us to share how the idea was born and why it was so important to connect with his peers. A unique episode of Ask the Expert! Welcome to Episode 37 - or our Live Smart, Play Smart Episode - of the Ask The Expert Podcast!  Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/  

In our first month of Ask the Expert’s new format we welcome you to our extended conversation with Dr. Jonathan Roberts, a hematologist with the Bleeding and Clotting Disorders Institute. In this bonus episode, we continue our conversation with Dr. Roberts where we learn how growing up with hemophilia led him to a passion for science and later on, medical school. We’ll hear his thoughts on what it has been like to be a physician and a patient during this paradigm shift in treatment for hemophilia and his thoughts about getting into the medical field for those interested in science. Join us as we get to know more of Dr. Roberts personal story! Welcome to Episode 36 - or our Get to Know the Expert - of the Ask The Expert Podcast!    Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.org

Growing up with hemophilia shaped how Dr. Jonathan Roberts encourages his patients every day. As the Associate Medical Director of the Bleeding and Clotting Disorder Institute, Dr. Roberts as had the opportunity to give back to the community he is personally connected to. Join us for a unique Ask the Expert with Dr. Roberts as he shares his thoughts on future treatments for hemophilia, his research on creating a better assay for von Willebrands diagnosis, and his passion for encouraging patients to become their own experts on their healthcare. A must listen for the bleeding disorder community! Welcome to Episode 36 - Part 1 - of the Ask The Expert Podcast!  Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.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. 

Imagine doing your due diligence for an upcoming medical procedure by double checking your facility and providers are in-network with your insurance plan, only to later find out that a provider treating you (e.g., an anesthesiologist or radiologist) does not participate in your health plan’s network after you receive a huge out-of-network bill out of nowhere. This is one example of a healthcare issue known as “surprise billing” and it could cost you and your family thousands of dollars. Ask the Expert joins HFA Director of Policy, Miriam Goldstein, to break the issue down for our understanding and explains potential solutions Washington is debating to fix this issue. Also joining us is HFA Director of Advocacy, Sonji Wilkes, a community member who faced this issue firsthand when her son was born and recently shared her story with Congress. A can’t-miss episode of Ask the Expert for all our rare disease advocates! Welcome to Episode 32 - or our Surprise Billing 101 Episode - of the Ask The Expert Podcast!    If you receive a bill from an out-of-network provider for planned procedure or have further questions about surprise billing, contact HFA through their website: www.hemophiliafed.org    If you have been experiencing issues with your insurance company, HFA wants to hear your story! Project CALLS [Creating Alternatives to Limiting and Lacking Services] is an opportunity for you to share your story and help the entire bleeding disorders community. HFA collects stories from across the country, collates the data, identifies trends, and uses the information to help policymakers and providers better understand and meet the needs of our community.   Participate here: https://www.hemophiliafed.org/for-patient-families/navigate-insurance/project-calls/    “Surprise medical bills can arise in an emergency when the patient has no ability to select the emergency room, treating physicians, or ambulance providers.” - Miriam Goldstein, HFA Director of Policy   “Unexpected medical bills, including surprise medical bills, lead the list of expenses most Americans worry they would not be able to afford.” -Miriam Goldstein, HFA Director of Policy   “Don’t be discouraged, patients will always have the louder voice. Our job is to tell decision makers, this issue matters to me. It’s up to us.” - Sonji Wilkes, HFA Director of Advocacy    

As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert!   Welcome to Episode 31 - or our In-Depth Look into MyBDC 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. For more information and to enroll in MyBDC, click the link: mybdc.hemophilia.org For specific questions email research@hemophilia.org The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes. All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created.  NHF has a newsletter, and research information is included. To sign up for the newsletter, visit www.hemophilia.org and scroll to the bottom of the page for the link. BloodFeed: https://www.bloodfeed.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   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

Hemophilia Foundation of Michigan’s Camp Bold Eagle is turning 50 this year! Camp Bold Eagle is the longest running summer camp for kids and teens with bleeding disorders in the United States and to celebrate this incredible accomplishment and to relish in the joy of summer camp, Ask the Expert invited staff of the Hemophilia Foundation of Michigan to join us as they reminisce about the history of camp, the amazing leadership that is developed at camp and share the evolution of Camp Bold Eagle. Whether you are a parent struggling with sending your child to camp for the first time or a seasoned camper that can’t wait to see your friends next summer, join us for a conversation about the history of bleeding disorder camps and unique power camp has to foster independence in all of us.   Welcome to Episode 30 - or our Summer Camp Special! Episode - of the Ask The Expert Podcast!     Find a bleeding disorder camp in your area: Hemophilia Federation of America Camp Directory National Hemophilia Foundation Camp Directory   “The concept back then was to see what they could do rather than couldn’t do.“ -Sue Lerch “Many chronic disease camps are designed to forget about disease, but hemophilia camp was designed to engage with the disorder to develop independence.” -Sue Lerch “Camp is not about the place - it’s about the people.” - Tim Wicks      

  Is a healthy joint an active joint or a stagnant joint? How many bleeds does it take to create damage? How does treatment adherence compliment our activity levels and joint health? Join us for the latest episode of Ask the Expert where nationally recognized physical therapist, Cindy Bailey, Ph.D, gives us the 101 on joint health, physical activity, and treatment adherence. Cindy is the director of physical therapy at the Los Angeles Orthopaedic Institute for Children and walks us through what defines joint health, how one bleed can create irreversible damage and the value of adhering to treatment regimens to stay active. Join us for a great Ask the Expert!   Welcome to Episode 29 - or our Does Treatment Adherence Mean Healthy Joints? Episode - of the Ask The Expert Podcast!     For more information about joint health and physical activity, check out these resources: Steps for Living: https://stepsforliving.hemophilia.org/step-up/treatment/treat-responsibly-today-for-a-healthy-tomorrow Hemophilia Federation of America: https://www.hemophiliafed.org/understanding-bleeding-disorders/complications/joint-damage/ World Federation of Hemophilia: http://elearning.wfh.org/elearning-centres/prophylaxis/ Bayer Announces  A Voluntary Recall of Two Lots of Kogenate FS: https://www.hemophilia.org/Newsroom/Medical-Advisories/Medical-Advisory-425-Bayer-Announces-a-Voluntary-Recall-of-Two-Lots-of-Kogenate-FS   “If you have better musculature around the joints, you will have fewer bleeds. ” -Cindy Bailey, Ph.D “Up to the ages of 8-11, you can repair cartilage damage by a bleed.”  - Cindy Bailey, Ph.D “Adherence is incredibly important because any amount of blood in the joint can cause deterioration” -Cindy Bailey, Ph.D     BloodFeed: https://www.bloodfeed.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   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

Did you know that women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms? Or that, on average, it takes women ten years to be diagnosed with endometriosis? On the latest episode of Ask the Expert, we dive into this topic and the long history of women feeling dismissed or ignored when it comes to their health. We are joined by Christie VanHorne, a consultant with CVH Consulting, who has developed training modules to demystify gender bias in healthcare. Christie walks us through the tools of how to identify gender bias, what is best when we relate to doctors and clinical staff when trying to have our voices heard, and most importantly, she reminds us that this is a cultural systemic issue. A great listen for the bleeding disorder community!   Welcome to Episode 28 - or our Gender Bias in Healthcare 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 and contact Christie on her website and social channels to learn more and get a gender bias training in your area! web: cvhconsultingllc.com email: christie@cvhconsultingllc.com Insta: cvhconsulting LinkedIn: Christie VanHorne, M.Ed, MPH FB: CVH Consulting, LLC   “Women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms” -Christie VanHorne “Our genetics determine how we manifest disease and yet medicine is not research to differentiate.”  - Christie VanHorne “It is so hard to defeat the stereotype “it’s all in their heads” -Christie VanHorne “Let’s shift our mindset towards seeing our doctors as partners in our care. They need us. We know when something is wrong.” -Christie VanHorne   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.

The latest episode of Ask the Expert features a conversation with Danna Merritt, a chronic disease social worker with over 50 years experience counseling parents of a child with a serious medical condition. Danna is creator and founder of Parents Empowering Parents (PEP), a decades long parenting program for the bleeding disorder community and Energizing and Empowering Minds, a non-profit with the mission of helping parents be parents, and kids be kids, in spite of their medical challenges. With her wealth of experience and a strong grasp of child development, Danna is the perfect expert mind to discuss the nuances of parenting. Danna answers real listener questions and shares tangible skills that parents can utilize. Listen in for a wonderful conversation has we celebrate the joys and struggles of parenting. Welcome to Episode 27 - or our Parenting episode - of the Ask The Expert Podcast!   Follow the link below to follow Danna’s non-profit Energizing and Empowering Minds and to connect to other parents in your area: https://eeminds.org/   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.

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.

Ever wonder what happens after you meet with a legislator and their staff? Ever wonder what they do with your courageous, compelling stories? Can you actually affect policy changes by advocating? Do your stories even matter? Join us for a special episode of Ask the Expert as we pull back the curtain on the legislative process! This month our guest is Bruce Barnum, a former staffer to Senator Al Franken. Bruce gives a glimpse of what it is like working for a congressional office, the importance of telling your story and how policy is informed by YOU! This is your chance to see that your voices truly matter. A can’t miss episode of Ask the Expert! Welcome to Episode 25 - or our Do Our Stories Actually Matter Episode - of the Ask The Expert Podcast!     Follow the link below to find out who represents you in Congress: https://whoismyrepresentative.com/   Additional Resources: To find contact information for your local district offices, go to your member’s website and find what office is closest to your home. Ask to meet with the member when they are back in town. Make sure to tell the staff what you’d like to discuss and have a flexible time-frame for the best chance of getting a meeting.   Follow the links below to see NHF and HFA’s policy positions: https://www.hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Priorities https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/policy-priorities/  

  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.    

New Ask the Expert host, Amy Board, sits down with previous ATE host Chris Bombardier! We ask Chris about his next adventure as the executive director of Save One Life and the future of the organization. Save One Life is a global non-profit founded by Laurie Kelley serving individuals and families affected by bleeding disorders in the developing world. Join us for a conversation with Chris as he explains the current realities of having a bleeding disorder in the developing world and what we can do to help and bring awareness. Welcome to Episode 23 - or our Chris Bombardier’s Next Adventure 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 sponsor a child with hemophilia across the globe: https://saveonelife.net/sponsorship Follow the link below to contribute to Save One Life’s scholarship program: https://saveonelife.net/help-a-student-pay-for-college Follow the link below to contribute to a family in the developing world start a business: https://saveonelife.net/help-a-family-start-a-business Follow the link below to send a child in the developing world to camp: https://saveonelife.net/product/help-a-child-go-to-camp 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 Ask the Expert, community advocate Donnie Akers joins Chris to discuss the in’s and out’s of traveling with your bleeding disorder, such as navigating the airport with your medication, what rights you have as a person with mobility challenges and where to go if you run into trouble while on a trip. All that, plus- MASAC’s new guidelines that are incredibly important for you to know, pertaining to your rights as a person with a bleeding disorder in the emergency room- and more, on episode 22 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. MASAC’s Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders 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.

Imagine having all the symptoms, and even the diagnosis of hemophilia, but you constantly hear that it’s impossible for you to have the condition. You undergo surgery without having factor available, suffer from bleeds and are placed in life-threatening situations, despite the fact that your factor levels have consistently shown that you have hemophilia. While this sounds like an outrageous scenario, most women with hemophilia have lived this exact same story. On our “Women with Bleeding Disorders” episode of the Ask the Expert Podcast, we dive into the challenges faced by women living with bleeding disorders and their struggle to receive a proper diagnosis and treatment, with our guest expert Tammy Davenport. 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.

Non-profit organizations couldn’t function without the critical work of VOLUNTEERS. Whether on the national or local level, volunteers help communities CONNECT. Volunteers serve on boards of directors, chair committees to organize fundraisers and events, stuff mailers to potential donors, and even set up tables and chairs for events. They do it all! That’s why the mighty VOLUNTEER is the focus of Episode 19 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. 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.

Summer is already coming to a close and for many families that means their kids are heading back to school or off to college. It’s an exciting time, but what if you aren’t ready for college or you don’t feel like that’s the right path for you? How do you go about finding a career that fits your life with a bleeding disorder and how do you approach the challenges of applying and interviewing for those jobs? That’s what we are going to discuss on our Career Counselor episode of Ask the Expert podcast, with special guest Don Molter! 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.

Mental illness in the bleeding disorders community is a challenging topic to discuss, but given that approximately one-third of people with a chronic illness experience symptoms of depression, it’s clearly a topic in need of more attention. This month’s guest is Debbie de le Riva, community advocate and social worker. She joins host Chris Bombardier and guest co-host Patrick James Lynch for an open and honest discussion about depression, mental illness, and suicide prevention in the bleeding disorders community, and the work that she’s doing to make an impact. NotOk app: https://www.notokapp.com/ Research Articles: Journal of Blood Medicine: Sue duTreil: Physical and psychosocial challenges in adult hemophilia patients with inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114907/ Haemophilia: Iannone M, Pennick L, Tom A, Cui H, Gilbert M, Weihs K, Stopeck AT: Prevalence of depression in adults with haemophilia. https://www.ncbi.nlm.nih.gov/pubmed/22642565 HERO Study: http://www.herostudy.org/ Suicide Prevention Hotline:  1-800-273-TALK (8255) https://suicidepreventionlifeline.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.

One of the easiest ways to keep our bodies healthy on a day to day basis is by eating well, but it’s also one of the hardest commitments to make. After a long hard day of work or school, it’s so easy to swing into a fast food restaurant or pop in a frozen pizza, even when we know we should go for something healthier. On today's podcast we will be exploring some of the myths around nutrition, tips for how to make healthy eating easier, and what effect food has on bleeding disorders. Our guest on Episode 16 of ‘Ask the Expert’ is Tracy Mann, a registered dietician and founder of Everyday Nutrition, LLC, who shares with us some easy and helpful ways to eat and feel better!   Everyday Nutrition, LLC. https://www.everydaynutritionllc.com/   Choose my Plate: Guide to helping you eat a more balanced diet. https://www.choosemyplate.gov/MyPlate   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.

In many developing countries, children that are born with chronic medical conditions are placed in orphanages. With limited hope for care in these situations one of the best hopes for these children is to be adopted. In this month’s Ask The Expert episode, we visit with Shari Luckey, the Adoption Advocacy and Outreach Coordinator for the Hemophilia Foundation of Michigan. Shari not only has personal experience adopting a child with hemophilia from a developing country but also works with individuals around the country to help them navigate the challenge adoption system. We explore her personal journey through adoption and learn about what the overall adoption process looks like. We also touch on the unique challenges this presents when the adopted child has a chronic medical condition. To contact Shari, please visit the website below. https://www.hfmich.org/what-we-do-adoption/   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.

There are many different healthcare providers that make up the the comprehensive care model at hemophilia treatment centers around the United States and much of the developed world. Physicians, nurses, social workers, physical therapists and many other healthcare professionals are all crucial team members in this model and can help individuals throughout their lifetime. Today for ‘Ask the Expert’, we will be focusing on the role of physical therapists in the care of individuals with bleeding disorders, how that has evolved in the decades since prophylactic treatment has become more common and what some of the new research shows in the bleeding disorders community. Episode 14, our physical therapy episode of the podcast features special guest Sharon Funk. Sharon Funk has been working as a physical therapist with the University of Colorado Hemophilia and Thrombosis Center for 41 years and has been a pioneer in the field of physical therapy and bleeding disorders. 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.

The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and Thrombosis Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy 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.   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.

Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail?  If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of  the Ask The Expert Podcast we catch up with Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we can be advocates. Welcome to Episode 12 - or our Community Advocates Episode - of the Ask The Expert Podcast!   Follow the link below and click the ‘Receive our Newsletter’ link to receive updates regarding healthcare updates referenced by Rich Pezzillo http://www.hemophiliafed.org/advocacy/ Registration for the National Hemophilia Foundation's Washington Days: https://www.hemophilia.org/Events-Educational-Programs/Washington-Days   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.

The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia and inhibitors be thinking and asking their clinicians about? That’s what we’re here to discuss with this month’s guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies 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.   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)   Link to Guy Young Interview Transcript   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.

For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to Episode 10 - or, our Bleeding Disorders Across The Globe 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. 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) LA Kelley Communications Save One Life 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.

“I can’t do that.” “That’s not for me.” “I’m not able to do that.”  Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder.  But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education 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. 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) Check out more of our podcasts on BloodStream Media Check out the GutMonkey website HERE

Food, family, food, travel, more food, money, more food still- the holidays can be a really stressful time! On this episode, social worker Eric Iglewski from the Mary M. Gooley Hemophilia Center in Rochester, New York joins Ask The Expert to talk through important considerations for people with bleeding disorders to keep in mind as we rapidly approach the wonderful chaos that is the holiday season! Welcome to Episode 8 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.   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)  

In this episode Randy Curtis, the Hemophilia Council of California’s Board President and longtime community activist, joins Ask The Expert to answer questions on aging with hemophilia, and the how he and peers in the Baby Boomer and Generation-X populations view this historic point in treatment history. We address that, and more, on Episode 7 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) Randy Curtis’ biography on the Hemophilia Council of California’s website. PROBE-ing Patients with Hemophilia from NHF’s Hemaware. Haemophilia Utilization Group Study: assessment of functional health status in hemophilia.

In this episode Carrie Koenig, the Hemophilia Federation of America’s (HFA) Families Program Manager, identifies the most important considerations for parents and families preparing for back-to-school season. What should parents of children with bleeding disorders be thinking about? What resources are available to help parents prepare? How active should kids be in advocating for themselves with teachers, administrators, and classmates? We address these questions and many more on Episode 6 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. Hemophilia Federation of America’s (HFA’s) Back-To-School Toolkit Learn more about 504 plans from HFA. Special thanks to the Texas Bleeding Disorders Conference for allowing us to record Ask The Expert questions with community members during their August 2017 meeting. Transitioning to a new school LINK Tips and Recommendations for kids with bleeding disorders to share with their schools LINK 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) 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, 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/  

In this episode, Katie Verb, the Director of Policy and Government Relations for the Hemophilia Federation of America, answers questions on health care legislation, advocacy, and the extraordinarily-troubling Better Care Reconciliation Act (BCRA) that has been drafted by Senate Republicans in an unprecedented and lightning-fast manner. What could the BCRA mean for our community and Americans at large, and what should we be doing about it? Find out on Episode 4 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. Links of Interest: HFA 2017 Health Care Legislation Outlook  LINK  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 Tweet it to us @BloodStreamInfo or @pjlynch (host)

In this episode Dr. Robert Sidonio, an Assistant Clinical Professor of Pediatrics at Emory University Hospital and the Clinical Director of Hemostasis/Thrombosis at the Children’s Hospital of Atlanta, answers questions on and about women with bleeding disorders. Dr. Sidonio is a leading expert in the treatment and management of women with bleeding disorders, and addresses topics such as common challenges, research gaps, and encouraging trends in Episode 3 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.   Links of Interest Premier Hematology and Oncology Link NHF Victory For Women Link Better You Know Link Let’s Talk Period Link PubMed Link Foundation for Women and Girls Learning Action Network Link NIH Funding Link   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 Tweet it to us @BloodStreamInfo or @pjlynch (host)

In this episode, pediatric hematologist Dr. Arash Mahajerin is back to answer listener-submitted questions on the future of portacaths for kids with hemophilia, what to do when mysterious bruising or joint pain begins to show, and marijuana- is it a legitimate form of medication, or not? His answers to those questions, and more, on Episode 2 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.   Links of Interest The Pros and Cons of Infusion Devices from NHF’s HemAware. Link Hemophilia Treatment Centers: 101 from NHF’s HemAware. Link Joint Disease from Living With Hemophilia (Bayer). Link 60 Peer-Reviewed Studies on Medical Marijuana from 1990-2014. Link The Foundation for Women and Girls with Blood Disorders. Link   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 Tweet it to us @BloodStreamInfo or @pjlynch (host)

In this - our first! - episode, Dr. Arash Mahajerin, a pediatric hematologist at the Children's Hospital of Orange County (California) and Assistant Clinical Professor at the University of California, Irvine, answers listener-submitted questions about all things bleeding disorders in the first episode of BloodStream Media's Ask The Expert podcast series. Subscribe to Ask The Expert and check out BloodStream Media's other podcasts at BloodStreamMedia.com. Interested in learning more about clinical trials? Check out ClinicalTrials.gov. Have a question you would like to ask an expert (on bleeding disorders)? You're in luck! Email mailbag@bloodstreampod.com.