FARA Focused on Funding Research for Friedreich’s Ataxia

  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. Some of the research FARA is funding includes a natural history study to better...

Rare Diseases are a Global Concern

  Femida Gwady-Sridhar, PhD, talks her involvement with Rare Disease International (RDI). RDI is a global alliance of rare disease patient organizations designed to be an international voice for the rare disease community. As Dr. Gwady-Sridhar explains in this...

The Origins of KIF1A.org

  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). KAND is due to a mutation in the KIF1A gene. Defects in that gene lead to a...

Partnering with Rare Disease Groups

  David Pearce, PhD of Sanford Research discusses how organizations can partner in rare diseases. That is the issue that is being addressed by a number of organizations, including Sanford Research and the International Rare Disease Research Consortium – two...

Advice to Newer Patient Groups

  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...

Patient Advocacy Podcast

  Kevin Freiert, a former Pfizer executive, talks about his podcast ‘Improbable Developments’ that interviews patients and patient advocates in order to learn more about how them and to raise awareness about their disease and/or get a medicine developed for their...
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