The National Hemophilia Foundation will be hosting a dynamic set of public health sessions as part of the upcoming Virtual Bleeding Disorders Conference (BDC). The product of an exciting collaboration between NHF and several national blood disorder advocacy organizations, these educational sessions will cover key topics that have far reaching implications for our communities, including emerging and novel therapies, surveillance, and a myriad of public health-related subjects relevant to affected women and girls. While these sessions are designed for NHF chapter staff and patients and families, all are welcome to attend!
Public Health Pre-Conference Symposium:
Future Therapies and Surveillance for Blood Disorders
Saturday, August 1, 2020 – 12:00pm – 3:00pm EST
This symposium was created by the Sickle Cell Community Consortium, National Blood Clot Alliance, Center for Inherited Bleeding Disorders (CIBD), Cooley’s Anemia Foundation, Cure HHT, U.S. Centers for Disease Control and Prevention (CDC), and NHF.
Topics:
- Gene Therapy Initiatives and the Needs of the Bleeding Disorders Communities
- Healthcare Inequity
- Key Surveillance and Reimbursement Issues for Novel Therapies Issues
- After Gene Therapy: Looking at the Possible Future of the Thalassemia Community
- Multidisciplinary HHT care through Hemophilia Treatment Centers: A Pilot Project
- Community Counts: National CDC Bleeding Disorders Surveillance Updates
- Community Voices in Research: Patient Reported Outcomes
Public Health for Women & Girls
Saturday, August 8, 2020 – 2:00pm-5:00pm EST
This session was created by the Sickle Cell Community Consortium, National Blood Clot Alliance, Center for Inherited Bleeding Disorders, Cooley’s Anemia Foundation, Foundation for Women and Girls with Blood Disorders, the Hemophilia Federation of America (HFA), and NHF.
Topics:
- Women at an Increased Risk of Blood Clots
- Fertility & Pregnancy in Thalassemia: Advances and Challenges
- Heavy Menstrual Bleeding in Adolescents and Modern Management: Lessons Learned from a Multidisciplinary Approach
- Better You Know: Outreach to Women
- HFA’s FIRST (Females in Research Sharing and Translation) Project: Results and Next Steps
- Women’s Bleeding Disorders & Public Health: Achieving Successes with Regional HHS Partners
