The Two Disabled Dudes Podcast - Navigating Disability

 

Posted by twodisableddudes on February 27, 2017

009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA)

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.

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Posted by twodisableddudes on February 22, 2017

008 – Paul Melmeyer, Associate Director of Public Policy, NORD

“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.

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Posted by twodisableddudes on February 20, 2017

007 – Interview with Max Bronstein of the EveryLife Foundation

 

“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.”

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