0.75x 1x 1.25x 1.5x 2x 0:0000:31:47 009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA) Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have…
Month: February 2017
0.75x 1x 1.25x 1.5x 2x 0:0000:40:54 008 – Paul Melmeyer, Associate Director of Public Policy, NORD Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify “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…
0.75x 1x 1.25x 1.5x 2x 0:0000:26:42 007 – Interview with Max Bronstein of the EveryLife Foundation Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify “We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments…
0.75x 1x 1.25x 1.5x 2x 0:000:46:12 006 – Nicole Boice, CEO Global Genes Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify 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 –…
0.75x 1x 1.25x 1.5x 2x 0:000:22:38 005 – Rare Disease Day Special Guests Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify 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…
I moved to New York City in June last year and a lot of people were a little skeptical as to how I would make it here living with Friedreich’s Ataxia. I made it my personal goal to show myself and them that I could live here, and so far I’ve definitely exceeded that…