Victor Grifols Roura Medical Symposium on Bone Health and Pain Disorders

This year’s Victor Grifols Roura Medical Pre-conference Symposium focused on several key aspects of “Bone Health and Pain in Bleeding Disorders.” A few leading clinician-researchers in the field were brought together to review the pathophysiology of bone disease, share current research data on bone health and the impact of pain in bleeding disorders, as well as offer physical therapy strategies and interventions for managing joints and associated pain.

Public Health: Aging

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Speakers will discuss a range of topics including new international guidelines for the diagnosis and management of hereditary hemorrhagic telangiectasia (HHT), mental and emotional health challenges in aging thalassemia patients, aging with a bleeding disorder, basics of Medicare, and skilled nursing facilities.

Public Health: Health Equity

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Speakers will discuss several topics: understanding and addressing sickle cell disease healthcare disparities, health equity issues impacting optimal care in thalassemia, health equity, and the influence on blood clots – pre and post COVID data, and the burden of healthcare in hereditary hemorrhagic telangiectasia.

Public Health: Women's Health Issues

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Speakers will discuss a spectrum of topics: maternal mortality and blood disorders, Healthy People 2020 and females with von Willebrand disease, mentors for workforce development and research, the Women in Research Engaged While Distancing (WIRED) program, and the use of Community Voices in Research (CVR) to promote self-advocacy and empowerment for women.

OUCH! Tackling Pain Together

NHF’s Medical and Scientific Advisory Council (MASAC) recently approved new treatment guidelines for providers who administer opioids to treat pain in people with bleeding disorders. Come learn about the new guidelines from expert providers and consumers and what they might mean to you.

Genetic Analysis and Other Diagnostic Tools for Rare Bleeding and Platelet Disorders

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This Second Annual Victor Grifols Roura Medical Preconference Symposium explores the diagnosis and clinical management of patients with rare inherited bleeding and platelet disorders. Faculty will be reviewing the treatments currently available to manage bleeding in these patients and share significant advances being made to improve genetic diagnosis, including valuable insights on how to interpret rare platelet gene panels.

This symposium was made possible only through the generous support of Grifols.

Public Health for Women & Girls

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After a successful public health offering at NHF’s 2019 BDC, NHF decided to collaborate with several national blood disorder advocacy organizations to deliver two public health sessions for chapters and consumers. This session will address women’s issues in public health and was created by the National Blood Clot Alliance, Center for Inherited Bleeding Disorders, Cooley’s Anemia Foundation, Foundation for Women and Girls with Blood Disorders, NHF, and HFA.