036 – Patient Advocacy – Live at Reata Pharmaceuticals

February 26, 2018 twodisableddudes No comments exist

We are proud to present the second half of our interviews at Reata Pharmaceuticals, this time it is all about Patient Advocacy and Patient Voice. Today is also the first day of Rare Disease Week, a US initiative sponsored by Rare Advocates, a week for those in the rare disease community to meet with our national Senators and Representatives in DC. Sean and Kyle are here in DC, along with our two behind-the-scenes dudes Jake and Matt, helping to amplify the patient voice! February is global Rare Disease Day!

During our recording at Reata, we had the privilege of talking to Kara Eichelkraut, who is responsible for Patient Advocacy at Reata Pharmaceuticals. Kara tells us a little about her background – how her education and preparation for pharmaceutical work led her to work in a pharmacy. And she hated that job. She then took a position at a pharmaceutical company, Reata. She heard of a 5k for mitochondrial disease and got a group of her fellow employees to participate at it. This was the start of her patient advocacy work – a totally new avenue for work at Reata. She grew to see the enormous value of patient advocacy.


Additionally she recalls her first encounter of Sean, as an awkward creeper at a rideATAXIA event.


Kara and the rest of Reata are getting excited for rideATAXIA Dallas, coming March 24. For more details on that event, click on the link.


We want to thank Reata Pharmaceuticals for allowing us to stop in and have a live podcast there. Thanks to all of our guests. On behalf of the rare disease community, we truly appreciate all of your work!


IMPORTANT NOTE- The movie The Ataxian, starring both Sean and Kyle is finally out on digital video formats today, February 26. Now is your chance to see this inspiring movie. Look for it on any of these platforms – iTunes, Google Play vied, Amazon video, Xbox, or the PlayStation Network. More at theataxianmovie.com.

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