Global Hemophilia Report

The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.

Contributors:

Keri Norris, PhD, JM, MPH, MCHES

Karina Lopez, MPH

Adrian Palau-Tejeda

Marissa Melton, MPH

Chris Bombardier

Mosi Williams

Senior Advisor:

Donna DiMichele, MD

Hosted by:

Patrick James Lynch

Written by:

Simantini Karve, PhD

Show Notes:

Presenting Sponsor: Sanofi

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Historically, camps for kids with hemophilia have played a specific and valuable role, enabling a young person with hemophilia to experience all the benefits of a traditional, summer camp experience. On this episode, we dig into the camp experience with some of the leading voices within the space.

Contributors:

Tracey Gaslin PhD, CPNP, FNP-BC, CRNI, RN-BC

Michael Wang, MD

Pat Torrey

Sarah Shinkman

Chris Bombardier

Senior Advisor:

Donna DiMichele, MD

Hosted by:

Patrick James Lynch

Written by:

Simantini Karve, PhD

Show Notes:

Presenting Sponsor: Sanofi

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Historically, people with hemophilia and especially children, have lived with considerable limitations when it comes to engagement in sports and athletics, thereby missing out on the numerous biopsychosocial and general health. However, both advancements in hemophilia care/treatment and advancements in understanding the benefits of engaging in sports have significantly changed the risk/benefit equation– but exactly, how?

Contributors:

Marilyn Manco Johnson, M.D.

Olav Versloot, PhD

Paul Mclaughlin

Chris Bombardier

Senior Advisor:

Donna DiMichele, MD

Hosted by:

Patrick James Lynch

Show Notes:

Presenting Sponsor: Sanofi

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Watch the film Bombardier Blood

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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

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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

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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.

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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.

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Global Hemophilia Report on LinkedIn

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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

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Global Hemophilia Report on Facebook

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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

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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

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