In the rare disease community, strength is in unity and supporting one another.
February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia (FA), the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal.
In this episode we talk about what is meant by “rare diseases” and how rare they really are.
This episode contains snippets of three interviews that will be released in their entirety later in the month. Nicole Boice, the CEO of Global Genes, speaks about the importance of knowledge in the rare disease community; only by knowing all we can about whatever disorder we may face can we successfully move forward. In the second snippet, Max Bronstein of the Everylife Foundation for Rare Diseases reminds us of the importance of policy issues when seeking treatments for rare diseases. Finally Paul Melmeyer from the National Organization of Rare Disorders (NORD) emphasizes the benefits of recognizing Rare Disease Day, and what that has done for the rare disease community overall.
On February 27, the day before Rare Disease Day, our interview with Ron Bartek, President and co-founder of the Friedreich’s Ataxia Research Alliance, will be released.
The Two Disabled Dudes invite you to help us spread awareness this month.
Organizations Highlighted in This Episode:
Global Genes – globalgenes.org
EveryLife Foundation for Rare Diseases – everylifefoundation.org
National Organization for Rare Disorders – rarediseases.org
Friedreich’s Ataxia Research Alliance (FARA) – curefa.org