AdvocacyLeading advocates and experts share their experiences
Brigid Brennan of the Friedreich’s Ataxia Research Alliance (FARA) discusses the origins of this patient organization and its mission to focus on research about Friedreich’s ataxia.
Femida Gwady-Sridhar, PhD, talks her involvement with Rare Disease International (RDI).
Luke Rosen, founder of KIF1A.org talks about the origins if this rare disease patient organization to help collect data on children with KIF1A associated neurological disorder (KAND).
David Pearce, PhD of Sanford Research discusses how organizations can partner in rare diseases.
Kristin Smedley, founder of Curing Retinal Blindness Foundation (CRBF) discusses how she used social media and other tools to build her patient advocacy organization and her brand. CRBF is recognized as a leader in the blindness advocacy field, largely due to the relentless pursuit of its founder getting herself out to the community.
Kevin Freier, a former Pfizer executive, talks about his new podcast ‘Improbable Developments’ that interviews various patients and patient advocates in order to learn more about how they were about to raise awareness about their disease and/or get a medicine developed for their patient populations.
Dennis Jackman, Senior Vice President, Public Affairs at CSL Behring discusses rare disease drug pricing, patient involvement in the drug development process, and drug access.
Joe Pugliese discusses the Hemophilia Alliance, a not-for-profit organization of federally funded hemophilia treatment centers that is working to ensure its member have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for persons with hemophilia and other bleeding disorders.
Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters.
David Pearce, PhD, of the Coordination of Rare Diseases at Sanford (CoRDS) talks about their patient advocacy conference held in Sioux Falls, SD.