August 18, 2023 National Bleeding Disorders Foundation Bleeding Disorders Conference
Taking You from Patient to LEE (Lived/Experience/Expert)
Speakers:
- Esmeralda Vázquez (Lived Experience Expert)
- Sammie Valadez (Lived Experience Expert, Beaver Creek Golfcarts)
- Maria Santaella, PhD (VP of Research Strategy, NBDF)
Summary:
In “Taking You from Patient to LEE (Lived/Experience/Expert),” attendees learned about new pathways for advocacy in bleeding disorders research. Research coordinators and participants from NBDF updated the audience on the state of the National Research Blueprint (NRB), and shared how patient advocates and their families can get involved. Lived Experience Experts shared their advocacy journeys, and discussed the role of patient advocates in shaping both research studies and investigative strategies as a step toward enhanced partnership with scientists and better communication between the scientific and patient communities.
Response: Red Ink
- Learning about the phases of the National Research Blueprint highlighted the need for women-centered, women-proctored research within the bleeding disorders community.
- Investing in women’s futures through women-led research is a key part of what Red Ink will work toward.
Red Ink 