Podcasts about bloodstream

Organ system for circulating blood in animals

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Best podcasts about bloodstream

Latest podcast episodes about bloodstream

BloodStream
NBDF CEO weighs in on current events

BloodStream

Play Episode Listen Later May 23, 2025 54:26


NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an interview with the founder of Hope Runs Red, Breana Sinkfield. All this and more!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.   Show Notes:   Visit Hope Runs Red and watch or share your story!    Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter   

BloodStream
Medicaid Cuts and vWD Clinical Trials

BloodStream

Play Episode Listen Later May 9, 2025 68:14


Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand's disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH's Comprehensive Care Summit in Dubai.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Medicaid Cuts - Take Action Today!   Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers' offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email:   I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care.    Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise.   Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country.   ** Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release   More information about the vWD clinical trial participation Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

FLOW - straight talk about extreme periods
Periods: Early Education and Experiences

FLOW - straight talk about extreme periods

Play Episode Listen Later May 8, 2025 44:02


In this episode, FLOWsters from Bloodstream Media share their first encounters with menstruation, coping with period pain, and managing menstrual health. They explore societal taboos, stories of learning about menstruation, and highlight experiences with bleeding disorders. The conversation underscores the importance of education and open dialogue. The team continues Flow's mission to normalize conversations around menstruation and educating everyone, not just those who menstruate; as Patrick notes: 'Women's health is human health.' Program Notes:   Episode Links: Bloodstream Media: https://www.bloodstreammedia.com/ Patrick Lynch: https://www.believeltd.com/patrick-james-lynch Bella Hunter: https://www.believeltd.com/bella-gadsby Hanna Beary: https://www.believeltd.com/hanna-beary   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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: BloodFeed: bloodfeed.com 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  

tiktok experiences periods calendly science fair early education stop the bleeding bloodstream patrick lynch bombardier blood believe limited bloodstream media my beautiful stutter bloodstream media find
Mas Que Raras
Desde Cuba a Cleveland, Ohio: Hablando de epilepsias genéticas y del síndrome CDKL5 con la Dra. Elia Pestana Knight

Mas Que Raras

Play Episode Listen Later Apr 30, 2025 38:30


Si quieren aprender más sobre las epilepsias genéticas y en particular del síndrome CDKL5, no se pueden perder este episodio de Mas Que Raras. La Dra. Elia Pestana, quien actualmente trabaja en el Cleveland Clinic Neurological Institute, nos lleva desde sus inicios en la Havana, Cuba hasta los Estados Unidos. Como su historia personal la llevo a querer cuidar de otros. Su pasión, su admiración y su dedicación por las familias cuyos hijos padecen epilepsias genéticas así como su deseo de enseñar a la próxima generación de médicos es realmente contagioso. ¡Los invitamos a escucharla!   Más información:  Cleveland Clinic https://my.clevelandclinic.org/staff/17816-elia-pestana-knight Show Notes: Subscribe: Mas Que Raras Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter    

BloodStream
New Music from Trevor Martin and info about Deliver Us, an upcoming documentary

BloodStream

Play Episode Listen Later Apr 25, 2025 84:28


One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI's Shanthi Hegde & Eliza Marie VanZweden! Whew!

Global Hemophilia Report
Maybe We're Not on the Same Page: Shared Decision Making in Hemophilia Care

Global Hemophilia Report

Play Episode Listen Later Apr 24, 2025 37:38


On this episode, we delve into the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophilia, emphasizing the importance of patient empowerment and ongoing education.   Guests: Brendan Hayes, MPH, CPH Cedric Hermans MD PhD FRCP   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   #MyHemophiliaTruth. Real stories. Powered by Sanofi. It's time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com   Mark's Story Join Mark as he shares about his experience living with hemophilia, including the impact it had on building and maintaining relationships throughout grade school, college, dating, and raising his family. Mark also highlights how shared decision making with his healthcare providers, and strong family and caregiver support in those decisions, can make all the difference when it comes to managing the daily challenges of hemophilia.   Click here to watch his story: https://www.youtube.com/watch?v=tQ8oeM0zL24&list=PLmqBxf22n4lPMpAfLe4yv8haC6Ejcp1XL&index=8   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter   

BloodStream
Shakeup at CDC - What does it mean???

BloodStream

Play Episode Listen Later Apr 11, 2025 40:58


On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   The CDC cuts are of particular concern to our community. The Division of Blood Disorders' work traces back to the 1980s' tainted blood crisis, when CDC investigators were the first to discern and warn of HIV's transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its “Community Counts” program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community. WHAT CAN YOU DO?   Call the Capitol switchboard: (202) 224-3121  *Anyone can call this number and get connected with their Senators and Representative. I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC's Division of Blood Disorders, where the hemophilia programs are housed. These programs:   Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments. Provide funding for education and outreach to increase patient and provider understanding of hemophilia. Help to protect the safety of our nation's blood supply.   I'm very worried about what this means for people with bleeding disorders and our country. Please work to restore the staffing and activities of the CDC Division of Blood Disorders.   I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. ** For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren't interested.  By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

FLOW - straight talk about extreme periods
MiTV: Menstruation in TV (Periods + Pop Culture, part 2)

FLOW - straight talk about extreme periods

Play Episode Listen Later Apr 10, 2025 46:26


In this episode of Flow, hosts Jessica Richmond and sex therapist Sarah Watson are joined by guests Jade and Leslie (Bloodstream Media / Believe Limited teammates)  to play a game called 'MiTV, Menstruation in Television'! They review and rate the accuracy of menstruation portrayals in various TV shows and films, including 'Euphoria', 'Orange is the New Black', 'Game of Thrones', 'Grease', 'Big Mouth', and 'The Handmaid's Tale'. The discussion highlights the importance of normalizing menstruation - complete with humorous and heartfelt commentary. Key takeaways? Pop culture is getting better at representing the monthly cycle as it continues to show women supporting each other during menstruation.   Program Notes:   Episode Links: Euphoria: https://www.youtube.com/watch?v=kRcvQN1lYzw Big Mouth: https://www.youtube.com/watch?v=NEbQ7CQPfNI Orange is New Black: https://www.youtube.com/watch?v=Quh92wZ7gUw Game of Thrones: https://www.youtube.com/watch?v=f1hF0CbzGDY Grease: https://www.youtube.com/watch?v=OHmHesDYPzw   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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: BloodFeed: bloodfeed.com 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  

BloodStream
I'm Fine: The Devil You Know

BloodStream

Play Episode Listen Later Apr 4, 2025 29:19


In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine' and the importance of embracing vulnerability for true resilience.   I'm Fine is presented by @SanofiUS   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter   

BloodStream
HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes

BloodStream

Play Episode Listen Later Mar 31, 2025 37:59


HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she's hearing in the community about gene therapy for hemophilia B.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Global Hemophilia Report
Are We Measuring the Right Stuff?

Global Hemophilia Report

Play Episode Listen Later Mar 27, 2025 32:19


On this episode of the Global Hemophilia Report, we discuss the limitations of current hemophilia care metrics. They explore the importance of measuring the impact on quality of life, the role of nurse-patient relationships, and the challenges faced by underrepresented patient groups, such as those with moderate hemophilia and women.    Guests: Brittany Savage, NP Cathy Harrison, RN, Adv Dip, BMedSci, MSc   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   #MyHemophiliaTruth. Real stories. Powered by Sanofi. It's time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com   The Bigger Picture in Hemophilia B:  Hemophilia A and hemophilia B are different bleeding disorders with unique pathologies and clinical features.1 Due to the distinct behavior of factor IX, multiple PK parameters should be considered when assessing bleed prevention. Learn how a broader view of PK may influence evaluation of treatment and management for patients with hemophilia B.2,3 Learn more at thebiggerpictureinhemb.com  1. Castaman G, Matino D. Haematologica. 2019;104(9):1702-1709. 2. Dolan G, Benson G, Duffy A, et al. Blood Rev. 2018;32(1):52-60.  3. Mann DM, Stafford KA, Poon M-C, Matino D, Stafford DW. Haemophilia. 2021;27(3):332-339. 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   

Mas Que Raras
Desde Buenos Aires a Filadelfia: Hablando de epilepsia infantil y neurogenética con la Dra. Pamela Pojomovsky McDonnell.

Mas Que Raras

Play Episode Listen Later Mar 26, 2025 36:23


En este episodio de Mas Que Raras contamos con una invitada excepcional: La Dra. Pam Pojomovsky McDonnell, destacada médica en la división de neurología del Hospital de Niños de Filadelfia (CHOP). Nacida en Buenos Aires, Argentina, la Dra. McDonnell nos habla de su increíble trabajo de investigación en epilepsia y neurogenética, y de cómo su experiencia como Latina la ha llevado a dedicar su carrera a mejorar la atención médica para poblaciones de habla hispana. Hoy, hablamos sobre su trabajo, sus desafíos y sus logros, así como su compromiso con nuestra comunidad.   Más información:  Iniciativa de Epilepsia y Neurogenética (ENGIN) https://www.chop.edu/centers-programs/epilepsy-neurogenetics-initiative-engin Pueden llamar al 267-425-0515   Hospital de Niños de Filadelfia en Español https://www.chop.edu/resources/chop-speaks-your-language-spanish   Audiograms: Show Notes: Subscribe: Mas Que Raras Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

ASN Kidney News Podcast
The Infection Prevention & Transitions of Care Series: Infection Prevention Strategies Amongst In-Center and Home Dialysis Patients Related to Reducing Catheter-Related Blood Stream Infections (Guest: Alan Kliger, MD)

ASN Kidney News Podcast

Play Episode Listen Later Mar 24, 2025 43:53


In this second episode, experts standardize evidence-based policies to improve care, review CDC's nine Core Interventions to reduce BSI, address patient challenges in reducing BSI, and explore NHSN Dialysis Event training for better infection control.

ASN NephWatch
The Infection Prevention & Transitions of Care Series: Infection Prevention Strategies Amongst In-Center and Home Dialysis Patients Related to Reducing Catheter-Related Blood Stream Infections (Guest: Alan Kliger, MD)

ASN NephWatch

Play Episode Listen Later Mar 24, 2025 43:53


In this second episode, experts standardize evidence-based policies to improve care, review CDC's nine Core Interventions to reduce BSI, address patient challenges in reducing BSI, and explore NHSN Dialysis Event training for better infection control.

BloodStream
I'm Fine: Honesty & Lies

BloodStream

Play Episode Listen Later Mar 21, 2025 8:52


On this special pop-up episode of the Bloodstream podcast, we're back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions.   I'm Fine is presented by @SanofiUS   Please share this survey with any friends you have with hemophilia A with or without inhibitors, who will help us educate the investment community on the need for new and better therapies.     $50 gift card to each of the first 50 survey respondents!   https://www.surveymonkey.com/r/geneventiv-2   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

DASON Digest
Ep.108 – Guideline-Driven Success: Standardizing Care for Gram-Negative Bloodstream Infections

DASON Digest

Play Episode Listen Later Mar 21, 2025 23:20


Episode Notes Join DASON liaison Jeannette Bouchard as she talks with Dr. Kati Shihadeh about her new article published in ASHE this year titled “Standardization in the management of gram-negative bloodstream infections after implementation of a clinical care guideline at a large academic, safety-net institution: a quasi-experimental study. The article reviewed in this episode can be found here: https://pmc.ncbi.nlm.nih.gov/articles/PMC11822621/ For more information about DASON, please visit: https://dason.medicine.duke.edu/

BloodStream
NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights

BloodStream

Play Episode Listen Later Mar 14, 2025 67:09


Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

FLOW - straight talk about extreme periods
Bleeding Disorders Awareness Month: Factor 7 Deficiency - Advocacy in Action

FLOW - straight talk about extreme periods

Play Episode Listen Later Mar 13, 2025 32:01


In honor of Bleeding Disorders Awareness Month, Flow is talking about advocacy in action for Factor 7 Deficiency. Our guest Stacy shares challenges with extreme menstrual pain and dismissed symptoms, emphasizing the importance of persistence while navigating a broken healthcare system where rare conditions are poorly understood. Despite facing systemic hurdles, keeping up with current research and working with several bleeding disorder foundations helps Stacy move the proverbial needle in accessing treatment.   Program Notes:   Episode Links: https://ches.education/board https://www.bleeding.org/bleeding-disorders-a-z/types/other-factor-deficiencies/factor-vii   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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: BloodFeed: bloodfeed.com 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

tiktok action advocacy factor awareness month calendly deficiency science fair stop the bleeding bloodstream bleedingdisorders bombardier blood believe limited bloodstream media my beautiful stutter bloodstream media find
BloodStream
I'm Fine: The First Fracture

BloodStream

Play Episode Listen Later Mar 7, 2025 9:40


On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenges.    I'm Fine is presented by @SanofiUS   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

BloodStream
Happy Rare Disease Day!

BloodStream

Play Episode Listen Later Feb 28, 2025 38:13


We celebrate Rare Disease Day because we love our Rares! Also, folks from WHF join us to share their comprehensive summit and the gene therapy segment is back with a new host and Dr. Mark Kay and genetic counselor, Kaylee Dollerschell.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  

Global Hemophilia Report
Health Literacy is Health Equity, and It Matters

Global Hemophilia Report

Play Episode Listen Later Feb 27, 2025 39:15


On this episode of the Global Hemophilia Report, we explore the critical topic of health literacy and its direct impact on health equity within the bleeding disorders community. Featuring insights from experts, the discussion highlights the urgent need to address gaps in health literacy to ensure better medical outcomes. The episode also examines the challenges posed by recent rollbacks of diversity, equity, and inclusion policies and presents innovative solutions being utilized to bridge these gaps.   Guests: Kerry Funkhouser, EdD Brendan Hayes, MPH, CPH Paula James, MD Magdalena Lewandowska Keri Norris, PhD, JM, MPH, MCHES   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: Join Shellye as she shares her inspiring journey as a woman living with hemophilia. After years of unanswered questions, her diagnosis highlights the critical role of health literacy in bridging care gaps. Through advocacy, Shellye raises awareness and empowers underserved communities. Watch her story and see how health literacy can break barriers and transform lives. Click here to watch her story: Sanofi – See Hemophilia Through My Eyes: Women & Girls   Sanofi's Global Hemophilia Survey uncovers significant care gaps and emotional challenges faced by patients and caregivers. Learn how improving health literacy and fostering better patient-provider communication are essential to addressing these inequities. Explore the findings and see how Sanofi is driving health equity for the hemophilia community. Explore the survey findings here: Global Hemophilia Survey Page.   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   

BloodStream
The wisdom of advocate Corbin Whittington

BloodStream

Play Episode Listen Later Feb 14, 2025 41:53


We've got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He's an incredible leader in the rare disease community and we're excited to have him on BloodStream! We'll also hear from Wes Michael from Rare Patient Voice.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org   Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com    Check out Corbin Whittington's LinkedIn page   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Global Hemophilia Report
Global Advocacy at the Organizational Level

Global Hemophilia Report

Play Episode Listen Later Feb 13, 2025 35:04


On this episode of the Global Hemophilia Report, we speak with guests who are each pioneering hemophilia advocacy in their respective regions. The discussion highlights the pivotal role of data and patient storytelling in driving systemic change and policy advancements. The episode emphasizes how global collaboration and technological innovations are paving the way for more equitable hemophilia care worldwide.    Guests: Harshal Kale, World Federation of Hemophilia Matthew Delaney, National Bleeding Disorders Foundation Megan Adediran, Hemophilia of Nigeria   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: 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   

Mas Que Raras
Desde la Republica Dominicana a Filadelfia: Hablando de enfermedades raras y el poder de la inclusión y la educación con la Dra. Jessie Reynoso

Mas Que Raras

Play Episode Listen Later Jan 29, 2025 37:01


En este primer episodio de 2025, tenemos el honor de conversar con la Dra. Jessie Reynoso, destacada genetista clínica originaria de la República Dominicana y experta en genética médica. La Dra. Reynoso comparte con nosotros su valiosa experiencia en el Hospital de Niños de Filadelfia, donde profundiza en su trabajo sobre trastornos del neurodesarrollo y errores innatos del metabolismo. Además, nos ofrece una perspectiva sobre las colaboraciones con países de América Latina y el impacto del aprendizaje a nivel internacional. Lo más inspirador es su recordatorio sobre el poder transformador de la educación en el diagnóstico y tratamiento de enfermedades raras. Este episodio está lleno de determinación y esperanza para nuestra comunidad. Más información:  Programa de observación en el Hospital de Niños de Filadelfia (CHOP) https://www.chop.edu/services/international-observership-program   Hospital de Niños de Filadelfia en Español https://www.chop.edu/resources/chop-speaks-your-language-spanish Show Notes: Subscribe: Mas Que Raras Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

BloodStream
Dr. Ben Samelson-Jones on Gene Therapy

BloodStream

Play Episode Listen Later Jan 24, 2025 33:02


Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we'll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We'll tell ya all about it!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

FLOW - straight talk about extreme periods
Know Your Flow (Tracking Offline) with the creators of The Cycle Book

FLOW - straight talk about extreme periods

Play Episode Listen Later Jan 24, 2025 38:20


Midwife Morgan and a sex therapist Laura join Jessica and Sarah to discuss The Cycle Book (available now!). The authors share frustrations with lack of data privacy of many digital tracking apps - as well as concerns about the inaccuracy of information provided!    Laura also shares her experience returning to birth control and coping with PMDD and Morgan discusses her endometriosis and anemia management. Each was motivated to create The Cycle Book when conversations with clients revealed recurring missing information…. “When people are trying to conceive…they are often surprised to find out that the 14 day thing isn't necessarily real, and the getting pregnant at any moment is most definitely not real, that it's actually just a very tiny little window.” Learn more of what you didn't know you didn't know - on this month's FLOW.   Program Notes:   Episode Links: Morgan Miller - https://softcornermidwifery.com/morgan Laura Federico - a https://www.laurafedericotherapy.com/ The Cycle Book: https://www.penguinrandomhouse.com/books/747795/the-cycle-book-by-laura-federico-lcsw-cst-and-morgan-miller-cpm-lm/   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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 My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com The Science Fair: thesciencefair.org  

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BloodStream
Behind the Mystery: Rare and Genetic Diseases

BloodStream

Play Episode Listen Later Jan 10, 2025 35:04


Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more!    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

BloodStream
Max Feinsten talks elbow surgery

BloodStream

Play Episode Listen Later Dec 27, 2024 34:29


Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I'm Fine segment with Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   I'm Fine is presented by @SanofiUS   Check out season 14 of Stop the Bleeding!   To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Global Hemophilia Report
What We've Learned - Season 3

Global Hemophilia Report

Play Episode Listen Later Dec 26, 2024 52:35


On this episode of the Global Hemophilia Report, host Patrick James Lynch and Senior Advisor Dr. Donna DiMichele review significant discussions from the season on therapeutic advancements, patient advocacy, and critical hematological research. They highlight key topics explored, such as the evolving therapeutic landscape, the role of data and patient involvement in advancing hemophilia care, and the persisting challenges in treatment, particularly for hemophilia B patients. The episode also addresses the impact of artificial intelligence in research and the importance of securing funding for post-licensure studies.   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: 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   

Mas Que Raras
Desde Colombia a California: Hablando de enfermedades de la retina con el Dr. Manuel Amador

Mas Que Raras

Play Episode Listen Later Dec 18, 2024 29:39


En este episodio, exploramos las enfermedades de la retina con el Dr. Manuel Amador. Originario de Colombia, el Dr. Amador es Director Médico en Genentech, con sede en California. Tras su formación en la Universidad Javeriana y la Clínica Barraquer, decidió especializarse en retina y vítreo en la Universidad de California, San Diego. Su experiencia abarca diversas condiciones, incluyendo la degeneración macular húmeda, el edema macular diabético, la retinopatía diabética y la atrofia geográfica, así como terapias génicas e intravítreas. Además, el Dr. Amador es un firme defensor de la diversidad y la inclusión, y trabaja activamente para aumentar la representación de pacientes hispanos y afroamericanos en estudios clínicos.   Más información:    Información en español sobre enfermedades retinales https://medlineplus.gov/spanish/retinaldisorders.html Audiograms:   Show Notes: Subscribe: Mas Que Raras Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

Keeping Current CME
Critical Decision Points in Bloodstream Infection Management: Evolving Approaches With Rapid Diagnostics

Keeping Current CME

Play Episode Listen Later Dec 17, 2024 33:13


Join 3 expert faculty as they discuss the role of rapid diagnostics in sepsis management. Credit available for this activity expires: 12/16/25 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/critical-decision-points-bloodstream-infection-management-2024a1000mvr/1?ecd=bdc_podcast_libsyn_mscpedu

BloodStream
Jonathan Cappiello is 1 out of 20

BloodStream

Play Episode Listen Later Dec 13, 2024 47:20


Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   It's a Whole New World brought to you by @CSLBehring.    The 1 out of 20 Podcast featuring PJL   Check out season 14 of Stop the Bleeding!   To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org  

FLOW - straight talk about extreme periods
Extreme Relief: Cannabis for Menstrual and Menopausal Wellness

FLOW - straight talk about extreme periods

Play Episode Listen Later Dec 12, 2024 44:41


This episode of FLOW features Lisa Williams, from Hello Again! Lisa shares her personal journey with fibroids, a hysterectomy, menopause, and how discovering cannabis-based vaginal suppositories dramatically improved her quality of life. The conversation touches on the value of cannabis in treating various health issues and how a supportive community to openly discuss challenges is essential!   Program Notes:   Episode Links: Hello Again: https://helloagainproducts.com/ Lisa Williams: https://www.linkedin.com/in/simplylisawilliams/   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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 My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com The Science Fair: thesciencefair.org

Global Hemophilia Report
The Future of the Comprehensive Care Model

Global Hemophilia Report

Play Episode Listen Later Nov 25, 2024 71:46


The comprehensive care model for hemophiliathe is experiencing transformative evolution. Our panel of esteemed experts highlight how data and innovation are driving change across the globe, and share their insights on the challenges and advancements in advancing specialized care for individuals with hemophilia.   Contributors: Amy Dunn, M.D. Sanjay Ahuja, M.D.  Cedric Hermans, M.D.,  Ph.D., FRCP Jan Blatný, M.D., Ph.D Suely Rezende, M.D., Ph.D   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: 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

BloodStream
Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey

BloodStream

Play Episode Listen Later Nov 22, 2024 43:54


We've got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we'll tell you all about it! Plus, the new season of Stop the Bleeding! And the I'm Fine segment with Michael Bishop.  Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast I'm Fine is presented by @SanofiUS Check out season 14 of Stop the Bleeding! To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

FLOW - straight talk about extreme periods
Animated Advocacy: Stop the Bleeding! on Periods and Bleeding Disorders

FLOW - straight talk about extreme periods

Play Episode Listen Later Nov 14, 2024 21:46


On this month's FLOW, peak behind the curtain of the award-winning comedic web-series Stop the Bleeding!     The guests share personal stories about learning about and dealing with hemophilia, periods, and the significance of portraying these issues through their characters on STBhemo.com - and the joys of benign part of an ( animated ) series that tackles choosing pride, dismantling shame, and raising awareness - specifically that women have hemophilia too!   Program Notes:   Episode Links: Stop the Bleeding! https://www.stbhemo.com/en/our-episodes Queen Noveen Hillary Hawkins   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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 My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com The Science Fair: thesciencefair.org  

BloodStream
Gene Therapy Roundtable and Honoring Jess McLean (Page)

BloodStream

Play Episode Listen Later Nov 8, 2024 31:54


On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)'s life and her contribution to the bleeding disorder community.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   It's a Whole New World brought to you by @CSLBehring.    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

BloodStream
NBDF CEO drawing inspiration from local communities

BloodStream

Play Episode Listen Later Oct 25, 2024 38:05


NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y'all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I'm Fine segment with Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   I'm Fine is presented by @SanofiUS Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Mas Que Raras
Un nuevo enfoque para las enfermedades neuro musculares con la doctora Diana Castro

Mas Que Raras

Play Episode Listen Later Oct 16, 2024 39:25


En esta fascinante entrevista, la Dra. Diana Castro comparte su energía y dedicación mientras relata su trayectoria como pediatra y neuróloga, comenzando en Colombia y continuando en Estados Unidos. Su visión transformadora sobre la atención médica y la investigación de enfermedades nuero musculares la ha llevado a desarrollar un innovador modelo de cuidado. Diana enfatiza la importancia de considerar al paciente y su familia como los verdaderos expertos en su situación, y cómo los médicos pueden tomar decisiones que prioricen el bienestar del paciente en lugar de los intereses de las instituciones. Esta entrevista es una experiencia enriquecedora, repleta de valiosas lecciones que despertarán tu curiosidad por conocer más. Más información:    Neurology Rare Disease Center https://www.neuromdcenter.com/ Show Notes: Subscribe: Mas Que Raras Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

BloodStream
The new insurance nightmare you need to know about

BloodStream

Play Episode Listen Later Oct 11, 2024 53:36


Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We've got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA's Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions.  Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Want more information on Alternate Funding Programs? Roland said to Google it.  But, here's some more stuff: AFP White Paper The Present and Future of Alternative Funding Programs for Specialty Drugs HFA Project ECHO: Recognition and Care of Women with Bleeding Disorders Oct 28 2024, 12:00 pm - 1:00 pm EST   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Genentech Patient Foundation is dedicated to making sure that people with hemophilia A can get access to treatment. No matter what type of health insurance you have, and even if you have none at all, there may be some potential options available to help you afford your medicine. To learn more about these resources and find out if you are eligible, visit www.HemophiliaAccess.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

FLOW - straight talk about extreme periods
Connect Your Community to Menstrual Realities

FLOW - straight talk about extreme periods

Play Episode Listen Later Oct 10, 2024 42:06


In this live episode from the Hemophilia Foundation of Michigan's Conference for Women and Teens, hosts Jessica and Sarah create an open dialogue about menstruation, aiming to normalize the conversation and encourage self-advocacy.    They invite participants (virtual and in person) to discuss their menstrual journeys, touching on subjects such as heavy bleeding, inadequate medical support, and the stigma surrounding periods. Special guests Christine, Francis, and Erica share stories of managing bleeding disorders, receiving late diagnoses, and utilizing various tools and products for relief. The episode passionately encourages advocacy, community support, and broader education on menstrual health.   Program Notes:   Episode Links: Hemophilia Foundation of Michigan's Conference for Women + Teens Women with Hemophilia - Documentary Sign Up   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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: BloodFeed: bloodfeed.com 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  

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BloodStream
International Plasma Awareness Week, y'all!

BloodStream

Play Episode Listen Later Sep 27, 2024 38:36


We recap NBDF's BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I'm Fine featuring guest host Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Help celebrate International Plasma Awareness Week!   I'm Fine is presented by @SanofiUS   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Global Hemophilia Report
Chapters & Grassroots Advocacy

Global Hemophilia Report

Play Episode Listen Later Sep 27, 2024 52:25


This episode of the Global Hemophilia Report podcast explores the significance of grassroots advocacy within hemophilia associations and chapters, emphasizing the critical role of data in advancing advocacy efforts. Experts from various U.S. organizations discuss the historical impact of the 1980s blood contamination crisis and the evolution of advocacy through its challenges and triumphs. The conversation highlights the importance of data collection, transparency, and community engagement in sustaining and enhancing treatment and support for those affected by hemophilia. The episode also addresses future advocacy strategies and the importance of continuous collaboration at the national and local levels. Contributors: Rigo Garcia, Hemophilia Federation of Southern California Sue Lerch, Great Lakes VE HTC Sue Martin, Bleeding Disorders Association of South Carolina Linda Mugford, Hemophilia Association of New York, Inc. Ray Stanhope, Lone Star Bleeding Disorders Foundation Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: 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   

BloodStream
Live at BDC with CEO Phil Gattone!

BloodStream

Play Episode Listen Later Sep 13, 2024 42:13


Coming to you LIVE from NBDF's Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don't wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview with Janet Brewer from CHES.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

FLOW - straight talk about extreme periods
Detox Your Environment For Healthy Hormones

FLOW - straight talk about extreme periods

Play Episode Listen Later Sep 12, 2024 40:22


Dr. Erin Ellis specializes in the complexities of hormone balance. On this month's FLOW, she unpacks the essential role environmental factors play in overall well-being. Her practical approach focuses on how combined lifestyle choices can / do have a positive impacting hormonal balance and menstrual health! Re: Extreme Menstruation  “You don't need to suffer - you don't! And that goes with anything in life.” - Dr. Erin Ellis   Program Notes:   Episode Links: Dr. Erin Ellis: https://hopenaturalhealth.com/dr-erin-ellis/ Instagram: https://www.instagram.com/dr.erinellis/ Facebook: https://www.facebook.com/drerinellisnmd/ Podcast: https://hopenaturalhealth.com/health-podcast/   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills  Tik Tok @jrichsocal   HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.   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: BloodFeed: bloodfeed.com 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

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Global Hemophilia Report
The Evolving Landscape of Novel Therapies for Hemophilia: What's Here & What's Coming?

Global Hemophilia Report

Play Episode Listen Later Aug 29, 2024 69:02


On this episode we talk with experts Dr. Amy Shapiro, Dr. Maria Elisa Mancuso, Dr. Steve Pipe, Dr. Johnny Mahlangu, and Dr. Lynn Malec to delve into the ongoing evolution of hemophilia therapies. The discussion highlights recent advancements in treatments such as emicizumab, extended half-life factor VIII therapies, and investigates medications in clinical trials like Concizumab, Marstacimab, and Fitusiran. The episode also reflects on the role of treatment individualization and the need for more inclusive research data.   Contributors: Johnny Mahlangu, MBBCh, MMed, FCPath Lynn Malec, MD, MSc Elisa Mancuso, MD Steven Pipe, MD Amy Shapiro, MD   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: 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   

BloodStream
Hemophilia Film: What We Wished We Could Be

BloodStream

Play Episode Listen Later Aug 23, 2024 65:58


Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the challenges of making the film, Jenna's personal connection to the UK contamination scandal, and how storytelling can honor the heartbreak, courage and sacrifice of the victims of the blood scandal, and their loved ones. Plus, the second installment of Jack Bridge's interview with Luke Pembroke in I'm Fine segment.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   To learn more about Miranda and others in the hemophilia community, please visit www.treathemA.com   I'm Fine is presented by @SanofiUS    What We Wished We Could Be film: Website - Instagram - Trailer   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

BloodStream
Gene Therapy Reimbursement? We got you covered.

BloodStream

Play Episode Listen Later Aug 9, 2024 45:58


Patrick survives his first tornado warning and we've got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. To read “What are fibrinogen disorders?” PDF, CLICK HERE.    Tammy's documentary Compromised: Life without Immunity   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   I'm Fine is presented by @SanofiUS    Listen to the Global Hemophilia Report   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Ben Greenfield Life
Toxic Underwear ALERT! What Your Underwear Is Doing To Your Balls (& Bloodstream) & How To Protect Yourself, With Daniel Baird.

Ben Greenfield Life

Play Episode Listen Later Aug 3, 2024 58:23


In this episode, you'll get to dive deep into the world of sustainable and non-toxic apparel with Daniel Baird, the co-founder and CEO of NADS—a pioneering men's underwear brand. You'll hear Daniel's personal health journey, from overcoming a head injury to battling hormonal imbalances, which sparked his mission to optimize health by reducing exposure to toxic chemicals in everyday items, including clothing. You'll also get to explore the dangerous effects of azo dyes and endocrine-disrupting chemicals in conventional apparel and how NADS utilizes GOTS-certified organic cotton and water-based fiber-reactive dyes to ensure safety and sustainability. Additionally, Daniel and I discuss the significance of making mindful, small choices in your daily routines, the benefits of organic, non-toxic underwear, and the broader impacts of EMF exposure. Dan Baird is a native of Wilton, Connecticut, a graduate of the University of Connecticut, and a health and wellness enthusiast. Dan's journey into the world of business has been guided by his love for digital design, direct-response marketing, and building brands that focus on well-being. With experience gained at Purple Frog Graphics, where he honed his marketing and branding skills, Dan set out to revolutionize men's clothing with NADS Organic Underwear (use code BEN15 to save 15%). His mission at NADS is to provide healthier clothing options crafted from organic materials free from harsh chemicals. Ready to join Dan and me as we delve into practical tips on health optimization, the importance of wearing non-toxic garments, and much more? You won't want to miss this engaging conversation packed with valuable insights to help you live a healthier and more mindful life. Full Show Notes: https://bengreenfieldlife.com/nadspodcast SiPhox: Visit siphox.health/ben with code BEN to get 10% off your health kit! Organifi Happy Drops: Go to organifi.com/Ben for 20% off your order. Pique: Visit PiqueLife.com/Ben, and get 15% off with a minimum of a $60 purchase. applied. Ketone-IQ: Save 30% off your first subscription order of Ketone-IQ at Ketone.com/BENG. LVLUP Health: Head over to lvluphealth.com/BGL for a special discount on their game-changing range of products.See omnystudio.com/listener for privacy information.

BloodStream
The Dark Side of High Achievement

BloodStream

Play Episode Listen Later Jul 26, 2024 38:27


Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I'm Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plus, Brandon Young and the  formation of a rare disease intercenter within FDA.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   To learn more about the FDA's Rare Disease Innovation Hub: EveryLife Foundation    Visit NBDF's Steps for Living   Brandon Young's Country Boy Fishing   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   I'm Fine is presented by @SanofiUS    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter