hemophiliab

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Connect with BloodStream Media:

Global Hemophilia Report on LinkedIn

enNovember 25, 2022

Pain in Hemophilia - Part 1 - Prevalence, Mechanisms, and Assessment

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

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Listen to BloodStream’s Pain Podcast

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Global Hemophilia Report

enNovember 17, 2022

Are patient influencers a good thing?

A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present.

Show Notes:

Subscribe:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey.

To get in contact with a CEM, visit www.TalkToACEM.com

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enNovember 11, 2022

Patrick’s new freedoms and restrictions post-op, plus Michelle Conde and the Glanzmann's Research Foundation

Patrick shares life post ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Gerogia’s Director of Advocacy, Michelle Conde AND members of Glanzmann's Research Foundation, Peter Z and Taylor Anne. We’ll cap the episode with another Let’s Talk mental health segment on acknowledging your past.

Show Notes:

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Check out the work Glanzmann's Research Foundation is doing!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. 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

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Global Hemophilia Report on LinkedIn

enOctober 28, 2022

Hemophilia B & the story of Tsarevich Alexei - Part 2

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

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Global Hemophilia Report on Facebook

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Global Hemophilia Report

enOctober 27, 2022

LGBTQ+ health issues w/ Dr. Nathan Connell and a vWD story of first pregnancy, labor, and delivery

On the heels of National Coming Out Day, BloodStream is joined by Dr. Nathan Connell, Clinical Chief of Hematology at Brigham and Women’s Faulkner Hospital to discuss LGBTQ+ health issues in the bleeding disorder community. Plus, Patrick reconnects with Annelise Ellis, longtime friend and fellow person with a bleeding disorder, as she shares with us her story of how von Willebrand disease impacted her first pregnancy, labor, and delivery.

Show Notes:

Subscribe:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Connect with BloodStream Media:

Global Hemophilia Report on LinkedIn

enOctober 14, 2022

Hemophilia B & the story of Tsarevich Alexei - Part 1

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

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Global Hemophilia Report

enOctober 13, 2022

Panel: Diversity, Equity & Inclusion in bleeding disorders, plus “living in the moment.”

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream’s Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation’s Bleeding Disorders Conference as well as the latest from the Let’s Talk mental health segment. Plus, news from ICER on gene therapy!

Show Notes:

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Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement

Article:

Presenting Sponsor:

- Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

- CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

- Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community.

- Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com

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