Podcasts about Haemophilia

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   

Tomaž Levak is the Co-founder and CEO of Trace Labs – OriginTrail core developers. OriginTrail is a web3 infrastructure project combining a decentralized knowledge graph (DKG) and blockchain technologies to create a neutral, inclusive ecosystem. Collective Memory for AI on Decentralized Knowledge Graph // MLOps Podcast #285 with Tomaz Levak, Founder of Trace Labs, Core Developers of OriginTrail. // Abstract The talk focuses on how OriginTrail Decentralized Knowledge Graph serves as a collective memory for AI and enables neuro-symbolic AI. We cover the basics of OriginTrail's symbolic AI fundamentals (i.e. knowledge graphs) and go over details how decentralization improves data integrity, provenance, and user control. We'll cover the DKG role in AI agentic frameworks and how it helps with verifying and accessing diverse data sources, while maintaining compatibility with existing standards. We'll explore practical use cases from the enterprise sector as well as latest integrations into frameworks like ElizaOS. We conclude by outlining the future potential of decentralized AI, AI becoming the interface to “eat” SaaS and the general convergence of AI, Internet and Crypto. // Bio Tomaz Levak, founder of OriginTrail, is active at the intersection of Cryptocurrency, the Internet, and Artificial Intelligence (AI). At the core of OriginTrail is a pursuit of Verifiable Internet for AI, an inclusive framework addressing critical challenges of the world in an AI era. To achieve the goal of Verifiable Internet for AI, OriginTrail's trusted knowledge foundation ensures the provenance and verifiability of information while incentivizing the creation of high-quality knowledge. These advancements are pivotal to unlock the full potential of AI as they minimize the technology's shortfalls such as hallucinations, bias, issues of data ownership, and model collapse. Tomaz's contributions to OriginTrail span over a decade and across multiple fields. He is involved in strategic technical innovations for OriginTrail Decentralized Knowledge Graph (DKG) and NeuroWeb blockchain and was among the authors of all three foundational White Paper documents that defined how OriginTrail technology addresses global challenges. Tomaz contributed to the design of OriginTrail token economies and is driving adoption with global brands such as British Standards Institution, Swiss Federal Railways and World Federation of Haemophilia, among others. Committed to the ongoing expansion of the OriginTrail ecosystem, Tomaz is a regular speaker at key industry events. In his appearances, he highlights the significant value that the OriginTrail DKG brings to diverse sectors, including supply chains, life sciences, healthcare, and scientific research. In a rapidly evolving digital landscape, Tomaz and the OriginTrail ecosystem as a whole are playing an important role in ensuring a more inclusive, transparent and decentralized AI. // MLOps Swag/Merch https://shop.mlops.community/ // Related Links Website: https://origintrail.io Song recommendation: https://open.spotify.com/track/5GGHmGNZYnVSdRERLUSB4w?si=ae744c3ad528424b --------------- ✌️Connect With Us ✌️ ------------- Join our slack community: https://go.mlops.community/slack Follow us on Twitter: @mlopscommunity Sign up for the next meetup: https://go.mlops.community/register Catch all episodes, blogs, newsletters, and more: https://mlops.community/ Connect with Demetrios on LinkedIn: https://www.linkedin.com/in/dpbrinkm/ Connect with Tomaz on LinkedIn: https://www.linkedin.com/in/tomazlevak/

Unexplained, sudden bruises. Wounds that take a long time to stop bleeding. For people living with haemophilia, bleeds - both externally and internally - are common because this condition affects the blood's ability to clot. We hear from Hariee Prabakaran, on what living with this rare inherited blood disorder is like as a child and adult, as well as from Dr Zulaiha Muda on how advances in treatment have changed the lives of people living with haemophilia. NCD Chronicles is a series about people living with NCDs, going beyond the diagnosis to explore their personal experiences, their challenges, as well as the impact of their health condition on their loved ones. These stories reveal the importance of understanding the unique struggles and needs of the individuals behind the disease, in our response to the NCD epidemic.

In this episode, Jen, Karan, and Ollie discuss recent newsworthy items, including the political shifts taking place across Europe and their potential impact to the pharma sector, as well as the challenges posed by medicine stockpiling and breakthroughs in hemophilia treatment.  Podcast Tags: healthcare, healthcare news, public health, Labour, pharma, medicine stockpiling, haemophilia, NHS, Novo Nordisk Source Links: With Europe facing right turn, how will public health be affected? Pharma responds to 2024 UK General Election Romanian hard-right takes healthcare on the road ahead of EU polls EU elections: a moment for pan-European health New Labour government backs pharma reform in UK Massive stockpiling of medicines increases patient risks, warns EU coalition Czechia slams Germany over drug stockpiling EU plan for medicine stockpile could worsen UK's record shortages Six EU countries push to end mandatory stockpiling of medicines Haemophilia gene therapy now available to NHS patients Novo Nordisk shares positive results for Mim8 in late-stage haemophilia A trial England, Denmark back CSL's haemophilia B gene therapy I have £2.6m blood and it has 'cured' my haemophilia Panel – Jen Burke, Karan Pandya, Ollie May Research & Production – Karan Pandya Recording & Editing – Mike Liberto, Rachel Skonecki For additional discussion, please contact us at TrendingHealth.com or share a voicemail at 1-888-VYNAMIC. 

This show has the second part of the interview with Philip Dehany and Nathaniel J Hall about his documentary for Channel 4 about 'Bug Chasers'. Also, Sue and David interviewed Robert James who was infected with Hepatitis C and HTLV 3 (Later HIV) when he was given infected blood to treat his Haemophilia as a child in the 1980's.

This week we conclude the story of the Great Moon Hoax of 1835 and learn about crown jewel thief Colonel Thomas Blood. A listener email explains why ancient Greek statues always had tiny wieners.Episode Tabs:The Great Moon Hoaxhttps://hoaxes.org/archive/permalink/the_great_moon_hoaxhttps://www.newyorker.com/books/page-turner/moon-shot-race-a-hoax-and-the-birth-of-fake-newsThe Irish Man Who Stole the Crown Jewelshttps://britishheritage.com/history/man-steals-crown-jewelsListener Tabs:https://www.dw.com/en/why-do-ancient-statues-have-such-small-penises/a-65151780https://en.m.wikipedia.org/wiki/Haemophilia_in_European_royaltyEmail your closed tab submissions to: 500opentabs@gmail.comSupport us on Patreon: https://www.patreon.com/500OpenTabs500 Open Roads (Google Maps episode guide): https://maps.app.goo.gl/Tg9g2HcUaFAzXGbw7Continue the conversation by joining us on Discord! https://discord.gg/8px5RJHk7aSUPPORT THE SHOW and get 40% off an annual subscription to Nebula by going to https://nebula.tv/500opentabsSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this edition, we expose the genocide of Australian medical patients with Haemophilia and how those responsible made fortunes and were even made into the face of Australia's favourite spread Vegemite!  Show links Children used as ‘human guinea pigs' because it was cheaper than lab chimpanzeeshttps://metro.co.uk/2024/05/13/blood-scandal-victims-used-instead-expensive-chimpanzees-20813090/The Sydney Morning Herald celebrate a mass murderer of children in this story https://www.smh.com.au/business/markets/beautiful-blood-how-csl-became-a-global-success-story-20180601-p4zis1.htmlBlood products guarantee sought https://ddd792de-b24d-47fe-8177-91b7438b0894.usrfiles.com/ugd/ddd792_14a31935555144469e620f0318a4c494.pdfEvidence from Charles MacKenzie witness statement to UK infected blood that exposes Dr Peter Schiff and CSL as genocidal mass murderers. https://static.wixstatic.com/media/ddd792_f619ae86d5494ef483d1ffbee8e13b11~mv2.jpegCSL May resume blood mixing report claims https://static.wixstatic.com/media/ddd792_666c1d8c9b8d4a6f92b1a2ba1f1bf11f~mv2.jpgThey made the biggest serial killer in Australian history the face of Vegemite https://www.australianjewishnews.com/vegemites-bloody-good-show/Please help Charles MacKenzie organise a meeting to announce the verdict of the UK infected blood inquiry by donating to his Go Fund Me here https://gofund.me/77abc074

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I'm Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

To mark World Haemophilia Day, we sit down with Professor Amit Nathwani of the UCL Cancer Institute to explore his journey to commercialising the groundbreaking haemophilia A treatment, Roctavian. Host Nigel Campbell is joined by Prof Nathwani and Dr. Rick Fagan, UCLB Director of Biopharm, to explore how Amit's work looking after patients with haemophilia in the NHS instilled a mission to develop a 'one and done' vaccine type approach to the condition. Amit's lab to market story, working with UCLB, led to the creation of Roctavian, a one-time gene therapy used for the treatment of adults with severe haemophilia A. The therapy, which was licensed to BioMarin Pharmaceutical Inc, received marketing approval in Europe in 2022 and US FDA approval in 2023, and is now available to patients commercially. Date of episode recording: 2024-04-10T00:00:00Z Duration: 00:23:58 Language of episode: English Presenter: Nigel Campbell Guests: Prof Amit Nathwani; Dr Rick Fagan Producer: Nora Amin

Listen to the SBS Sinhala discussion on how to manage Haemophilia - අප්‍රේල් මස 17 වැනිදාට යෙදෙන ලෝක හිමොෆීලියා දිනයට සමගාමීව, හිමොෆීලියා රෝගය පාලනය කරන්නේ කෙසේද යන්න සම්බන්ධයෙන් SBS සිංහල සේවය සිදු කල සාකච්චාවට සවන්දෙන්න

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC.  Show Notes: Subscribe: The BloodStream Podcast   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.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

In this edition, Charles MacKenzie speaks about the retirement last week of Ita Buttrose as chair of the tax payer funded Australian Broadcasting Corporation (ABC) and reveals why Australians never got to find out about their nations deadliest medical scandal HIV & HepC contaminated blood. Show linksPlease help Charles keep surviving and fighting for accountability by donating to his Go Fund Me here https://gofund.me/77abc074Ita print ad from 1985 where she lied about Haemophilia treatments being ‘purified' https://static.wixstatic.com/media/ddd792_d2874372777a4ef3a2c9342cce36349b~mv2.jpg Ita Buttrose's time as Chair of the National Advisory Committee on AIDShttps://www.youtube.com/watch?v=JDIO-AJN2_0The Australian Red Cross Lifeblood advertised for blood donors in sexually explicit gay publications such as the Sydney Star during the AIDS crisis https://www.infectedbloodaustralia.com/art51989 Haemophilia treatments not sterilised against deadly virus Hepatitis C. https://static.wixstatic.com/media/ddd792_cfb0cc665dbf4bf299aae943cf8ed6f4~mv2.jpegIta Buttrose + Bill Bowtell A friendship forged through crisishttps://www.abc.net.au/listen/programs/yours-queerly/ita-buttrose-bill-bowtell-a-friendship-forged-through-crisis/103490902Please sign the petition for a Royal Commission here https://www.infectedbloodaustralia.com/registration

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA's history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Check out the Everyday Life Foundation hosting Bombardier Blood Everyday Life Foundation Legislative Asks   This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit www.thecommunityhelps.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

We've got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed.  Show Notes: Subscribe: The BloodStream Podcast To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Over the last twenty two years Sharon Caris the executive director of the Haemophilia Foundation Australia (HFA) was paid millions of dollars to coverup the genocide of Australian Haemophiliacs and to make sure care was denied survivors and their loved ones. Sharon Caris announced her retirement in November, possibly timed by her and the HFA wanting to avoid the coming scrutiny over their paid role in the coverup of Infected Blood Scandal. In this episode we speak about the true role of Sharon Caris and why her retirement is so important. Show linksThe report of Hepatitis C and the Australian blood supply https://www.infectedbloodinquiry.org.uk/sites/default/files/1901-2200%20copy%203/1901-2200%20copy%203/WITN3939015%20-%20Hepatitis%20C%20and%20the%20blood%20supply%20in%20Australia%20-%2001%20Jun%202004.pdfSharon Caris retires https://www.haemophilia.org.au/publications/news/postcards-for-sharonPlease support a Royal Commission of inquiry into the Australian Red Cross/CSL infected blood scandal here https://www.infectedbloodaustralia.com/registrationPlease help Charles MacKenzie pay for his medicine so he can stay alive: https://gofund.me/77abc074

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I'm Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine and Elite Athletes are presented by @SanofiUS  Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community. Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

We're back with another episode of BloodStream featuring Maya Bloomberg's 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I'm Fine segment with Mark Skinner.    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  

This episode covers haemophilia.Written notes can be found at https://zerotofinals.com/medicine/haematology/haemophilia/ or in the haematology section of the 2nd edition of the Zero to Finals medicine book.The audio in the episode was expertly edited by Harry Watchman.

On this episode, we will address defining sexual health and its importance to hemophilia care, best practices and standards for addressing sexual health, implementing a practice of addressing sexual health into a comprehensive care model, envisioning progress in care models for addressing sexual health in both global and personalized ways and more.    Contributors: Greig Blamey, Physiotherapist Maureen Baldwin, MD William McKeown, MD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch Written by: Simantini Karve, PhD   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Telehealth options are assumed to provide added benefit to providers and patients alike, but how much do we really know and understand about telemedicine? Listen in to the latest episode of Global Hemophilia Report as our contributors share how telemedicine has potentially benefited and detracted from hemophilia care across different populations as well as what research must still be done on the rise of telehealth in hemophilia care   Contributors: Sativa Rangarajan, Associate Professor of Clinical Haematology  Michelle Witkop, DNP, FNP-BC  Dr. Roshni Kulkarni, Professor & Former Director Michigan State University Centers For Bleeding And Clotting Disorders Annette von Drygalski, MD, PharmD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch Written by: Simantini Karve, PhD   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

This podcast explores the current burden of haemophilia; namely the geographical prevalence and treatment regimes, as well as examining novel gene therapies for haemophilia. Steven Pipe, Professor of Pediatrics and Professor of Pathology, University of Michigan, Ann Arbor, USA, and Radek Kaczmarek, Assistant Research Professor of Pediatrics, Indiana University School of Medicine, Indianapolis, USA, review the new generation of gene therapies, discussing how the novel therapeutics differ from current treatments. This was funded by an educational grant from Pfizer, who had no input to the creation of this educational podcast.

Anzac Day remembers Australians and New Zealanders who served and died defending our nations. It's a day about remembering and honouring heroes. What better day then to have a second interview with Aussie world darts champion and Haemophilia hero Tony David. In this episode we find out Tony David's throwing action that took him to global dominance in the sport of darts and we learn about how he had to take on a challenge even bigger than winning a world title or order to survive tainted blood. Show notes Hepatitis C and the blood supply in Australia 2004 unanimously agreed recommendations for Australians who received Hepatitis C tainted blood. https://static.wixstatic.com/media/ddd792_d174655d85034579a3f726b6cd4bf03f~mv2.jpgSupport the podcast When Humanitarians Kill by donating to our Go Fund Me here:https://gofund.me/7ac4c6f2

17 April is World Hemophilia Day. Hemophilia a rare disorder in which the blood doesn't clot in the typical way because it doesn't have enough blood-clotting proteins. Looking for an inspiring Hemophilia Day story? Look no further than Cobus Visser. Despite the challenges of living with Hemophilia, Cobus has never let it hold him back from pursuing his passions and trying new things. He is passionate about raising awareness of Hemophilia and hopes to inspire others to live life to the fullest. Cobus is the perfect candidate for an interview that will motivate and encourage anyone affected by Hemophilia while raising awareness and understanding of the condition.

Tony David is rarity in every scene of the word. He has a rare condition, a bleeding disorder called Haemophilia. He then copped tainted blood as a kid. But just like his nickname in the darts world the ‘deadly boomerang' he made the most astonishing comeback and is the only Australian to win a world darts championship. But the comebacks don't stop there, after requiring three liver transplants to stay alive due to the tainted blood he received, Tony is now speaking up about the criminal mistreatment of Australian infected blood victims and their families and is interviewed by Charles MacKenzie.Show notes:Help this podcast When Humanitarians Kill and our investigation survive by supporting our Go Fund Me campaign here https://gofund.me/7ac4c6f2Canadian Haemophilia hero James Kreppner https://www.thestar.com/news/gta/2009/05/25/james_kreppner_47_patients_rights_activist.htmlTony David Embassy World Championships win https://youtu.be/4wjuqljnm0ITony David blood diary notes of first heat treated factor 9 blood product in 1993https://static.wixstatic.com/media/ddd792_89cc713534b849158b78e1fdb7a7da7a~mv2.jpegThe Australian Red Cross advertised for blood donors in sexually explicit publications during the AIDS crisis https://www.infectedbloodaustralia.com/art6https://www.infectedbloodaustralia.com/art5CSL chair Brian McNamee in the secretive nature of Australia's blood supply https://static.wixstatic.com/media/ddd792_2cdefeb69a034924993b8cf223a59920~mv2.jpg

A stacked episode with a new Maya Bloomberg (@TheHemeNP !) segment, music from community member Tamar Mitchell, and Patrick sits down with Dr. Z (Zolotnitsky !) to discuss his PT work it the hemophilia community. All that, and more, on this World Hemophilia Day episode of BloodStream Podcast!   Show Notes: Subscribe: The BloodStream Podcast   Celebrate World Hemophilia Day on social media!   Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!   Listen here to Tamar Mitchell's new EP:  Instagram Apple Music Spotify Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Patrick and Amy discuss the reaction to Patrick's viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let's Talk.    Show Notes: Subscribe: The BloodStream Podcast   Check out Bleeding China on Substack by Blood Brother, John Christen Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Let's Talk shares tips on how to care for your own or someone you love's mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources. Brought to you by Sanofi   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

On this episode we're in conversation with research leaders to learn more about the current state of hemophilia research, the barriers and opportunities we're facing today, and what the future of hemophilia research might look like.     Contributors: Flora Peyvandi, MD, PhD Keith Hoots, MD Len Valentino, MD Michelle Witkop, DNP, FNP-BC Glenn Pierce, MD, PhD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Before retiring from cycling last year, Alex Dowsett was the only known elite sportsperson with haemophilia to compete in an able-bodied field. He's now setting his sights on the London Marathon to raise money for his charity, Little Bleeders (littlebleeders.com), and shares some inspiring lessons from his remarkable career.Co-hosts Rick and Ben also share the expert approved seven strength moves all runners need to do (see below for details)Dr Richard Blagrove is one of the foremost experts in strength and conditioning, having worked with some of the UK's top runners at St Mary's and Loughborough universities. So when Blagrove was asked, on Matthew Boyd's The Adaptive Zone podcast, what the seven best strength exercises are for runners, his answers are worth noting down. Here's what he said:1. A squat-type movement, such as a front squat or back squat.2. A hinge-hip movement pattern, such as a Romanian deadlift or a deadlift from the ground.3. A stepping movement pattern, such as a barbell or dumbbell step-up (try holding the dumbbell only in one hand to challenge your trunk).4. A lunge pattern, such as a split squat5. Loaded single leg calf-raise or a calf-press hold on a leg press.6. Pull-ups on a bar7. Standard press-upsFor a gold star, add in some deadbug exercises, which will recruit your hip flexors a little bit more. Do these exercises twice a week to see the benefits. If you struggle to fit in two whole workouts, consider doing 10-15 minutes a day, with the aim of accumulating the same amount of work per week as two full sessions.In terms of reps, for novices, Blagrove recommends 10-12. As you become more trained, you can vary the repetition ranges. For instance, you could try a more maximal block, where you go as low as 3 reps. And then work a bit more in the middle ground, between 5-10 reps.By the end of each exercise, aim to be on a perceived exertion level of about 8 out of 10. ‘That will tell me they've got maybe two or three repetitions in reserve, which is about right,' said Blagrove. ‘You're working hard but not to complete failure.' Hosted on Acast. See acast.com/privacy for more information.

Dr. Justin Kreuter, Transfusion Medicine attending at Mayo Clinic, joins Alex and Venk on the podcast to talk about transfusion in its many dimensions. We talk through a model of evaluation for patients with life threatening bleeding, how to interpret tests, the science behind the 1:1:1 ratio of trauma transfusion practice and much much more! CONTACTS Twitter - @AlwaysOnEM; @VenkBellamkonda; @KreuterMD Instagram – @AlwaysOnEM; @Venk_like_vancomycin; @ASFinch; @KreuterMD Email - AlwaysOnEM@gmail.com REFERENCES & LINKS Lab medicine rounds podcast link: https://news.mayocliniclabs.com/homepage/podcasts-2/lab-medicine-rounds/ Holcomb JB, Tilley BC, Baraniuk S, et al. Transfusion of plasma, plaeteles, and red blood cells in a 1:1:1 vs a 1:1:2 ratio and mortality in patients with severe trauma – the PROPPR Randomized Clinical Trial. JAMA. 2015; 313(5):471-482 Holcomb JB, Del Junco DJ, Fox EE, et al. The prospective observational multicenter major trauma transfusion (PROMTT) study: comparative effectiveness of a time-varying treatment with competing risks. JAMA Surg. 2013 Feb;148(2):127-136 J-Y Borg et al. FEIBA in the treatment of acquired hemophilia A: results from the prospective multicentre French ‘FEIBA dans l'hemophilie A acquise' (FEIBHAC) registry. Haemophilia. 2015 May;21(3):330-337 Sharp G, Young CJ. Point of care viscoelastic assay devices (rotational thromboelastometry and thromboelastography): a primer or surgeons. Anz J Surg. 2019 Apr;89(4):291-295 Hospital Liaison Committee for Jehovah's Witnesses: https://www.jw.org/en/medical-library/strategies-downloads/hospital-liaison-committees-jehovahs-witnesses/

There has been a remarkable increase in the life expectancy of persons living with hemophilia (PLWH) over the past century, largely due to access to safe factor replacement products.  However, the course of progress has been uneven, and rocky, for many. This is part two of our series on Aging with Hemophilia. Contributors: William McKeown, MD Randall Curtis Gerry Dolan, MD, MBChB, FRCP, FRCPath Barbara Konkle, MD Sara L. Schwartz, PhD  Tam Perry, PhD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

BloodStream welcomes back NHF Vice President of Public Policy, Nathan Schaefer to talk everything Washington Days and advocacy! Plus, an interview with community member and social worker, Mosi Williams and a new segment of The Well. Oh, and Amy and Patrick share some personal advocacy wins and bummers too! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

We've got Dr. Steven Pipe with us to discuss the first gene therapy approved for hemophilia B, HEMGENIX. As the lead investigator of the HEMGENIX trial, Dr. Pipe details what patients need to know about HEMGENIX and what questions to consider when speaking with their hematologist. A must listen episode!    Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

A legislative package was approved at the end of 2022 with several wins and several disappointments for the rare disease community–we talk about it! Also, we welcome Aditi Kantipuly, a Research Collaborator for the CDC for a chat about health equity. Plus, Jessica Lauren Richmond is back with The Well, a segment featuring 5 steps to make your new year's resolutions stick. Show Notes: Subscribe: The BloodStream Podcast     Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   As part of H.R. 2617, Congress delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought for and will help speed efforts to develop effective therapies and expand access to care. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

There has been a remarkable increase in the life expectancy of persons living with hemophilia (PLWH) over the past century, largely due to access to safe factor replacement products.  However, the course of progress has been uneven, and rocky, for many.   Contributors: William McKeown, MD Randall Curtis Gerry Dolan, MD, MBChB, FRCP, FRCPath Barbara Konkle, MD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Listen to Blood of the Paladin Podcast   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report Listen to BloodStream's Journey to Joint Health episode.   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 

Renowned hematologist, researcher, and senior advisor to the Global Hemophilia Report Dr. Donna DiMichele shares some of her Season 1 takeaways and thoughts about the future of hemophilia research. Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report Listen to BloodStream's Journey to Joint Health episode.   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 

On this episode, we continue our discussion of chronic pain in hemophilia. We'll discuss exercise, medication and investigations.   Contributors: Nathalie Anne Roussel, PhD, MSc, PT Paul Mc Laughlin,  BSc, MSc, MMACP   Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors): Michelle Witkop, DNP, FNP-BC Tyler Buckner, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report Listen to BloodStream's Journey to Joint Health episode.   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 

According to the Centers for Disease Control, pain is one of the most common reasons people seek medical care. However, for persons affected by hemophilia A and B, the experience of pain has provided the subtext for many issues related to health and wellbeing across the lifespan, and irrespective of gender, age, and, potentially, hemophilia severity levels. Although less-well characterized in children, pain is already embedded in the life experience of a PWH, and a substantial contributor to poor health-related quality of life in adolescence and young adulthood, further increasing in negative impact throughout adult life. In this episode, we explore pain's prevalence, mechanisms, and more.    Contributors: Nathalie Anne Roussel, PhD, MSc, PT Paul Mc Laughlin,  BSc, MSc, MMACP Michelle Rice    Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors): Michelle Witkop, DNP, FNP-BC Tyler Buckner, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Listen to BloodStream's Pain Podcast   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  

Welcome to Ask Stago, the Podcast dedicated to provide expert answers to your expert questions in coagulation. In today's episode, our guest Tom Childs will help us to understand the goal and clinical benefits of the Factor parallelism method.   Link to previous podcasts: S1E11 – How to be more productive (part 1): implementation of a rules engine  S2E8 - World Hemophilia Day  S2E4 - How to determine factor levels in hemophilia?  Literature sources: Ma AD, Carrizosa D. Acquired factor VIII inhibitors: pathophysiology and treatment. Hematology Am Soc Hematol Educ Program 2006: 432–7 (https://ashpublications.org/hematology/article/2006/1/432/19703/Acquired-Factor-VIII-Inhibitors-Pathophysiology). Morfini M. Articular status of haemophilia patients with inhibitors. Haemophilia 2008; 14 (Suppl 6): 20–2. Gringeri A, Mantovani LG, Scalone L, Mannucci PM; COCIS Study Group. Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood 2003; 102 (7): 2358–63 Monahan PE, Baker JR, Riske B, Soucie JM. Physical functioning in boys with hemophilia in the U.S. Am J Prev Med 2011; 41 (6 Suppl 4): S360–8. Collins PW, Chalmers E, Hart D et al.; United Kingdom Haemophilia Centre Doctors' Organization. Diagnosis and management of acquired coagulation inhibitors: a guideline from UKHCDO. Br J Haematol 2013; 162 (6): 758–73 (https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.12463). Riley PW, Gallea B, Valcour A. Development and implementation of a coagulation factor testing method utilizing autoverification in a high‑volume clinical reference laboratory environment. J Pathol Inform 2017; 8: 25. Witmer C, Young G. Factor VIII inhibitors in hemophilia A: rationale and latest evidence. Ther Adv Hematol 2013; 4 (1): 59–72 Oldenburg J, Mahlangu JN, Kim B et al. Emicizumab prophylaxis in hemophilia A with inhibitors. N Engl J Med 2017; 377 (9): 809–18. Florin L, Desloovere M, Devreese KML. Validation of an automated algorithm for interpretation of lupus anticoagulant testing on the Stago STA R Max (Poster). International Society on Thrombosis and Haemostasis, 2017.   Content is scientific and technical in nature. It is intended as an educational tool for laboratory professionals and topics discussed are not intended as recommendations or as commentary on appropriate clinical practice.

In Part 2 of our Hemophilia B episode, we spotlight research priorities into women with hemophilia B, novel therapies to treat people with hemophilia B, and we conclude the story of Alexei Nikolaevich, the last Tsesarevich of Russia.   Contributors: Bethany Samuelson Bannow, MD Brian O'Mahony Kathaleen M. Schnur, MSW, LCSW   Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors): Dr. Amy Shapiro Professor Jan Astermark   Hosted by: Laurence Woollard   Links to learn more:   Brown A. "The Royal Disease and The Royal Collapse: Political Effects of Hemophilia in the Royal Houses of Europe." Honor Scholar Theses. 2017;63. [Online]. Available at: https://scholarship.depauw.edu/cgi/viewcontent.cgi?article=1063&context=studentresearch [Accessed 10 October 2022]   Gualtierotti R, et al. Updates on novel non-replacement drugs for hemophilia. Pharmaceuticals 2022;15(10):1183. Doi: 10.3390/ph15101183   Hart DP, et al. International consensus recommendations on the management of people living with haemophilia B. Ther Adv Hematol 2022;13:1-22. Doi: 20406207221085202   Hoffman TA. "Bad Blood: Hemophilia and Its Detriment to the Russian Imperial Family." Young Historians Conference. 2022;8. [Online]. Available at: https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1244&context=younghistorians [Accessed 10 October 2022]   Lannoy N, Hermans C. The ‘royal disease' – haemophilia A or B? A haematological mystery is finally solved. Haemophilia 2010;16:843-47. Doi: 10.1111/j.1365-2516.2010.02327.x   Nathwani A, et al. Liver gene therapy. Hum Gene Thur 2022;33:17-18. Doi: 10.1089/hum.2022.169   O'Donovan M, et al. Recombinant factor IX-Fc fusion protein in severe hemophilia B: Patient-reported outcomes and health-related quality of life. Res Pract Thromb Haemost 2021;5(7):e12602. Doi: 10.1002/rth2.12602   Peeling S. Russo-Japanese War. International Encyclopaedia of the First World War. 1914-1918. [Online]. Available at: https://encyclopedia.1914-1918-online.net/article/russo-japanese_war [Accessed 10 October 2022]   Potts WTW. Royal haemophilia. J Biol Educ 1996;30(3):207-17. DOI: 10.1080/00219266.1996.9655504   Price KD. "Diary of Nicholas II, 1917-1918, an annotated translation." Graduate Student Theses, Dissertations, & Professional Papers. 1966;2065. [Online]. Available at: https://scholarworks.umt.edu/cgi/viewcontent.cgi?article=3084&context=etd [Accessed 10 October 2022]   Radcliffe J. “Rasputin and the Fragmentation of Imperial Russia.” Young Historians Conference. 2017;14. [Online]. Available at: https://pdxscholar.library.pdx.edu/younghistorians/2017/oralpres/14/ [Accessed 10 October 2022]   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Hemophilia B is a rare inherited X-linked disorder characterized by a congenital anomaly in the factor IX gene leading to a variable deficiency in clotting factor IX. In this episode, we explore the known differences between Hemophilia B and Hemophilia A and discuss priority areas for further research into Hemophilia B. The episode also guides listeners on an entertaining journey through 19th and 20th century European monarchy and the unlikely role that hemophilia played in forever shaping Europe's governance!    Contributors: Bethany Samuelson Bannow, MD Brian O'Mahony Kathaleen M. Schnur, MSW, LCSW   Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors): Dr. Amy Shapiro Professor Jan Astermark   Hosted by: Laurence Woollard   Links to learn more:   Brown A. "The Royal Disease and The Royal Collapse: Political Effects of Hemophilia in the Royal Houses of Europe." Honor Scholar Theses. 2017;63. [Online]. Available at: https://scholarship.depauw.edu/cgi/viewcontent.cgi?article=1063&context=studentresearch [Accessed 10 October 2022]   Hoffman TA. "Bad Blood: Hemophilia and Its Detriment to the Russian Imperial Family." Young Historians Conference. 2022;8. [Online]. Available at: https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1244&context=younghistorians [Accessed 10 October 2022]   Lannoy N, Hermans C. The ‘royal disease' – haemophilia A or B? A haematological mystery is finally solved. Haemophilia 2010;16:843-47. Doi: 10.1111/j.1365-2516.2010.02327.x   Potts WTW. Royal haemophilia. J Biol Educ 1996;30(3):207-17. DOI: 10.1080/00219266.1996.9655504   Price KD. "Diary of Nicholas II, 1917-1918, an annotated translation." Graduate Student Theses, Dissertations, & Professional Papers. 1966;2065. [Online]. Available at: https://scholarworks.umt.edu/cgi/viewcontent.cgi?article=3084&context=etd [Accessed 10 October 2022]   Radcliffe J. “Rasputin and the Fragmentation of Imperial Russia.” Young Historians Conference. 2017;14. [Online]. Available at: https://pdxscholar.library.pdx.edu/younghistorians/2017/oralpres/14/ [Accessed 10 October 2022]   Funnell APW, Crossley M. Hemophilia B Leyden and once mysterious cis-regulatory mutations. Trends Genet 2014;30(1):18-23. Doi: 10.1016/j.tig.2013.09.007   Simioni P, et al. X-linked thrombophilia with a mutant factor IX (factor IX Padua). N Engl J Med 2009;361(17):1671-5. Doi: 10.1056/NEJMoa0904377   Nogami K, et al. Clinical conditions and risk factors for inhibitor-development in patients with haemophilia: A decade-long prospective cohort study in Japan, J-HIS2 (Japan Hemophilia Inhibitor Study 2). Haemophilia 2022;28(5):745-59. Doi: 10.1111/hae.14602   Thorland EC, et al. Anaphylactic response to FIX replacement therapy in haemophilia B patients: complete gene deletions confer the highest risk. Haemophilia 1999;5(2):101-5.    Chitlur M, et al. Inhibitors in factor IX deficiency a report of the ISTH-SSC international FIX inhibitor registry (1997-2006). Haemophilia 2009;15(5):1027-31. Doi: 10.1111/j.1365-2516.2009.02039.x   DiMichele D. The North American Immune Tolerance Registry: contributions to the thirty-year experience with immune tolerance therapy. Haemophilia 2009;15(1):320-8. Doi: 10.1111/j.1365-2516.2008.01880.x   Astermark J, et al. The B-Natural Study – The outcome of immune tolerance induction therapy in patients with severe haemophilia B. Haemophilia 2021;27(5):802-13. Doi: 10.1111/hae.14357   Iorio A, et al. Establishing the prevalence and prevalence at birth of hemophilia in males: a meta-analytic approach using national registries. Ann Intern Med 2009;171(8):540-46. Doi: 10.7326/M19-1208   Soucie JM, et al. Occurance rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres. Haemophilia 2020;26(3):487-93. Doi: 10.1111/hae.13998   Berntorp E, et al. Quality of life in a large multinational haemophilia B cohort (The B-Natural Study – Unmet needs remain. Haemophilia 2022;28(3):453-61. Doi: 10.1111/hae.14525   Kihlberg K, et al. Treatment outcomes in persons with severe haemophilia B in the Nordic region: The B-NORD study. Haemophilia 2021;27(3):366-74. Doi: 10.1111/hae.14299   Feng D, et al. Evidence of clinically significant extravascular stores of factor IX. Thromb Haemost 2013;11(12):2176-2178. Doi: 10.1111/jth.12421   DiMichele DM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014;20(2):e136-43. Doi: 10.1111/hae.12364   Buckner TW, et al. Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. Eur J Haematol 2017;98:5-17. Doi: 10.1111/ejh.12854     Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

On the show Josh chats to Mark Ward about his life living with Haemophilia and the effect the Blood Scandal of the 70s and 80s has had. https://haemophilia.org.uk/ World and Community News

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

Women, girls, and those with the potential to menstruate (WGPPM) who live with hemophilia, have more difficulty getting a diagnosis and accessing adequate care than their biological male counterparts. But why? What research is underway to support the needs of these individuals? This episode takes a wide-lens approach to exploring the socio-cultural barriers and gender-related challenges facing WGPPM in the global hemophilia community.   Contributors: Dawn Rotellini Andra James, MD, MPH Connie Miller, PhD Tyler Buckner, MD Maureen Baldwin, MD, MPH Kristin Paulyson Nunez, M.S., C.G.C   Senior Advisor: Donna DiMichele, MD   Episode Advisors: Angela Weyand, MD Robert Sidonio, MD   Hosted by: Laurence Woollard   Links to learn more: Bercovitz RS. “A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH”: Comment. J  Thromb Haemost 2022;20(7):1744-45. DOI: 10.1111/jth.15727   Chaudhury A, et al. Women and girls with haemophilia and bleeding tendencies: Outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review. Haemophilia 2021;27(2):293-304. DOI: 10.1111/hae.14232   d'Oiron R, et al. Women and girls with haemophilia: Lessons learned. Haemophilia 2021;27(S3):75-81. DOI: 10.1111/hae.14094   DiMichele DM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014;20(2):e136-43. DOI: 10.1111/hae.12364   Fox L. Women and girls with hemophilia: Gender-based differences in comprehensive care. NHF Bleeding Disorders Conference 2019. [Online]. Available at: https://www.hemophilia.org/research/research-projects/women-and-girls-with-hemophilia-gender-based-differences-in-comprehensive-care   Kirtava A, et al. Trends in clinical management of women with von Willebrand disease: A survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia 2004;10:158-161. DOI: 10.1046/j.1351-8216.2003.00832.x    Malouin RA, et al. Practice Characteristics of Genetic Counselors Serving the North American Bleeding Disorders Community. [Poster]. World Federation of Hemophilia 2016 World Congress , May 2016.    Miller CH, et al. Women and girls with haemophilia receiving care at specialized haemophilia treatment centres in the United States. Haemophilia 2021;27(6):1037-44. DOI: 10.1111/hae.14403   Rajpurkar M, et al. Current challenges for men and women with mild-to-moderate haemophilia. Haemophilia 2021;27(S1):5-7. DOI: 10.1111/hae.14193   van Galen K, et al. European principles of care for women and girls with inherited bleeding disorders. Haemophilia 2021;27(5):837-47. DOI: 10.1111/hae.14379   van Galen KPM, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. J Thromb Haemost 2021;19(8):1883-87. DOI: 10.1111/jth.15397   Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost 2020;5(1):51-4. DOI: 10.1002/rth2.12468   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  Listen to the FLOW podcast

Smitha Mundasad asks whether we will see waves of Covid – with infections going up and down and then up and down again - forever more. We speak to Elliot whose life has been transformed after a single shot of gene therapy to treat the inherited blood disorder haemophilia B. And Dr Margaret McCartney discusses the accidental discovery of Viagra and how sometimes researchers find new, surprising uses for old medicines. Produced by Geraldine Fitzgerald.

Good News: Scientists and medical researchers have created an actual CURE for hemophilia B, a dangerous blood disorder! Link HERE. The Good Word: A classic and familiar quote from Gandalf in The Lord Of The Rings. Good To Know: A weird fact about a very odd lake in Australia! Good News: The reintroduction of tortoises […]

Brian O'Mahony, Chief Executive, Irish Haemophilia Society on the new treatment

In March 2022, a Washington Post article highlighted children and adolescents in the US experiencing a mental health crisis, but how does a hemophilia diagnosis further complicate a young person's mental wellbeing? What data exists to support interventions? This episode explores the state of research and understanding of hemophilia's impact on a young person's mental health.   Episode Advisors: Dr. Michelle Witkop Samantha Carlson, LMSW   Contributors: Randall G. Curtis, MBA Dr. Gráinne O'Brien Dr. Duc “Bobby” Tran Amanda Stahl, LCSW   Senior Advisor: Dr. Donna DiMichele   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Even with the introduction of prophylaxis, the goal of achieving perfect bone and joint health for patients with hemophilia through normalizing homeostasis remains elusive. In this episode, we cover the current monitoring and detection strategies and explore the investigational work that's aimed at enhancing existing tools, validating suspected tools, and discovering entirely new ones.     Episode Advisors: Dr. Marilyn Manco-Johnson Dr. Kathelijn Fischer   Contributors: Dr. Annette Von Drygalski Dr. Tyler W. Buckner Dr. Amy Dunn Dr. Suchitra S Acharya Dr. Andrea Doria Dr. Beth Warren Tom Russomano   Senior Advisor: Dr. Donna DiMichele   Links to learn more: Young adult outcomes of childhood prophylaxis for severe hemophilia A: results of the Joint Outcome Continuation Study Measurement of joint health in persons with haemophilia: A systematic review of the measurement properties of haemophilia-specific instruments Vascular remodeling underlies rebleeding in hemophilic arthropathy Quantitative measurements of haemophilic joint tissues by point‐of‐care musculoskeletal ultrasound: Associations with clinical and functional joint outcome parameters How Do PROMIS Scores Correspond to Common Physical Abilities? Evaluating international Haemophilia Joint Health Score (HJHS) results combined with expert opinion: Options for a shorter HJHS   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Prophylaxis in hemophilia has led to extraordinary progress, however, recent studies suggest that although the overall musculoskeletal health of persons with hemophilia has significantly improved, the goal of attaining a level of musculoskeletal health comparable to that of the general population without hemophilia has still not been achieved. Furthermore, the impact of prophylaxis has been uneven across hemophilia populations and the promise of greater physical activity free of hemorrhage has not been entirely fulfilled. This episode explores the history, evolution, and current state of prophylaxis, and highlights the current and future areas of further investigation.   Contributors: Episode Advisors: Dr. Marilyn Manco Johnson Dr. Kathelijn Fischer   Contributors: Dr. Robert Sidonio Dr. Manuel Carcao  Dr. Maria Elisa Mancuso Susan Lynch   Senior Advisor: Dr. Donna DiMichele   Links to learn more: A history of prophylaxis in haemophilia Hemophilia A and B: Routine management including prophylaxis Young adult outcomes of childhood prophylaxis for severe hemophilia A: results of the Joint Outcome Continuation Study Tailored frequency-escalated primary prophylaxis for severe haemophilia A: results of the 16-year Canadian Hemophilia Prophylaxis Study longitudinal cohort Factor VIII replacement prophylaxis in patients with hemophilia A transitioning to adults: a systematic literature review Long-term outcomes with emicizumab prophylaxis for hemophilia A with or without FVIII inhibitors from the HAVEN 1-4 studies Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens Optimising prophylaxis in haemophilia A: The ups and downs of treatment Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Gene therapy, hemostatic rebalancing therapies, memetic therapies, and even factor replacement therapy are all currently being explored in clinical trials, but while these therapies are paving the way to historical treatment ease and efficacy, they are also sweeping the hemophilia community into uncharted territory of potentially new challenges that must be addressed. This episode explores the current state of novel therapy investigation in hemophilia. Contributors: Dr. Maria Elisa Mancuso Dr. Glenn Pierce Dr. Steven Pipe Dr. Lindsey George Dr. Margareth Ozelo Dr. Guy Young Dr. Michael Recht Dr. Rich Gorman Mark Skinner Luke Pembroke   Senior Advisor: Dr. Donna DiMichele Links to learn more: Future Therapies - National Hemophilia Foundation 2021 clinical trials update: Innovations in hemophilia therapy Advances in the management of haemophilia: emerging treatments and their mechanisms Emerging drugs for hemophilia A: insights into phase II and III clinical trials Discussing investigational AAV gene therapy with hemophilia patients: A guide Hemophilia Clinical Trials - ClinicalTrials.gov Show Notes: Featured Advertiser: Sanofi Subscribe to BloodStream Media's Global Hemophilia Report Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter