AdvocacyLeading advocates and experts share their experiences
Ruth-Anne Langan Pai of the Castleman Disease Collaborative Network (CDCN) provides an overview of what CDCN is doing for its patient and research community.
Jennifer Siedman, Patient Disease Outreach Coordinator for the Courageous Patient Network, explains how this non-profit organization helps those families managing children with a serious illness.
This May 18th, Chelsea in New York will host DISORDER, the rare disease film festival.
Priya Kishnani, MD, of Duke University School of Medicine speaks to the rare disease patient community and says ‘their time has come’.
Dianne Linnehan, Director of Operations of the Phelan-McDermid Syndrome Foundation is also the parent of a person with Phelan-McDermid syndrome, and as she explains in this interview, her daughter provides her with immeasurable strength and joy, despite the rare disease that afflicts her.
Andra Stratton, president of Lipodystrophy United provides an overview of lipodystrophy.
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.