Researchers, Dr. Aimée Dudley and Dr. Andrea Gropman, and patient advocate, Tresa Warner, discuss the most common urea cycle disorder.
All tagged patient advocacy community
#240 Young Adult Patient Advocacy with Sneha Dave
Sneha Dave, Founder and Executive Director of Generation Patient, discusses her experience as a young adult patient advocate for ulcerative colitis.
#149 CF Series: Gunnar Esiason on Patient Advocacy
Rare disease patient leader shares about his journey with cystic fibrosis and how he utilizes his experience to advocate for the community.
#102 Seth Rotberg on Huntington Disease
Patient Advocate and Motivational Speaker shares his journey with Huntington Disease.
#98 Lydia Seiders on Aplastic Anemia
Maryland State Ambassador for NORD brings her passion for patient advocacy for the rare disease community including her daughter known as #EmmaStrong.
#96 Jim Cavan on Backpack Health
A mobile and cloud-based app that helps people with chronic, serious and rare health concerns better manage their health journeys.
#81 Irina Brooke on BRCA2
Patient advocate shares advice from her genetic testing/counseling and breast cancer journey.