We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich’s ataxia (FA), this organization and Ron himself are special to us.
“Alone we are rare. Together we are strong.” –National Organization for Rare Disorders
In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases.
“We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments on the market for those diseases. We have a long way to go and there’s a lot of work that needs to be done if we ever want to get to the point where we have one treatment for all of those diseases or even multiple treatments – and that is what our foundation is set up and designed to do.”
The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support – and hope – is abundant.
“When I started looking at the stats and facts about Rare Disease…that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn’t anyone talking about it? Why aren’t we hearing about it in mainstream media? Why aren’t there more resources available for these families?’” – Nicole Boice.