August 19, 2023 National Bleeding Disorders Foundation Bleeding Disorders Conference
From Volunteer to Professional Advocate, A Community Conversation
Speakers:
- Matt Delaney (Government Relations Specialist, NBDF)
- Madeline Smith (comp. NYLI, law student)
- Mallory O’Connor (comp. NYLI, Executive Director of Public Policy at Mallinckrodt Pharmaceuticals)
- Will Hubbert (comp. NYLI, Grassroots and Advocacy Manager at the National Psoriasis Foundation)
- Chelsee Nabritt (comp. NYLI, LEE, Community Outreach Manager for the Department of Behavioral Health and Developmental Disabilities for Georgia)
Summary:
In “From Volunteer to Professional Advocate – A Community Conversation,” several patient advocates shared their personal advocacy journeys and the impact of bleeding disorders-related advocacy on their career choices. As former participants in the National Youth Leadership Institute (NYLI), each panelist discussed how formative experiences with the healthcare system and early opportunities to lobby at state and federal levels contributed to their decisions to pursue health policy-related avenues of study and work. Emphasizing the power of young people in the bleeding disorders community, each panelist reflected on the evolving role of advocates, from personal advocacy to lobbying and acting as Lived Experience Experts in research studies.
Response: Red Ink
- Hearing from young leaders in the bleeding disorders community emphasized the need for self-advocacy training that is specifically tailored to young women’s experiences with bleeding.
- Red Ink will utilize self-education and advocacy outreach as tools that are crucial to empowering young women with bleeding disorders.
Red Ink 