WE ARE RAFFA
A 501(c)3 Organization Dedicated to Advancing the Awareness of Friedreich's Ataxia.
What is Friedreich's Ataxia?
Friedreich's ataxia (also called FA or FRDA) is a rare inherited disease that affects the nervous system. It usually begins in childhood and eventually leads to impaired muscle coordination (ataxia) that worsens over time.
What is RAFFA?
RAFFA was born out of necessity. The lengthy diagnosis of one family member, the years of waiting with no real answers, and the lack of general knowledge about FA prompted us to form RAFFA, creating resources and opportunities for others with disabilities.
RAFFA's Mission
The organization's purpose is to raise awareness of Friedreich's ataxia (FA), a rare disease affecting 1 in 50,000 people, and to provide assistance to the disabled community and to improve the quality of life for those with disabilities, including FA.
Our Events
RAFFA is dedicated to providing resources and opportunities to those diagnosed with FA and other disabilities. We partner with organizations around the country looking for ways we can make a difference in the lives of others.