2013 Global Genes Patient Advocacy Summit

Posted by Courtney Larned

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Oct 1, 2013 9:30:00 AM

Earlier this summer, we had the opportunity to start having discussions with one of the most amazing organizations: The Global Genes Project. They are one of the leading rare and genetic disease patient advocacy organizations in the world, and work to promote the needs of the rare and genetic disease community.

Last Friday, Amy attended the Global Genes Patient Advocacy Summit, a packed event for patients, and led by advocates and experts to provide tactical and practical advice to the representatives from these rare disease organizations.  The entire day's content was innovative, disruptive, and from the portions that I watched during the live webcast, and was real advice and legitimate solutions that patient advocates were able to take back to their organizations.

Amy was on the Platforms panel, focused on "Connecting Your Community Online." Her co-panelists were Ben Heywood, the Co-Founder and Chairman of PatientsLikeMe and Kyle Brown, the Founder and CEO of Patient Crossroads, and discussion was focused around technology, how it’s changed the way that patients and their organizations communicate and work together, and tips for choosing the best solutions. The session was moderated by Barbara Lavery, the President of ZooMedia.

Check out the video from Amy's session here:

2013: Platforms Panel: Connecting Your Community Online from Global Genes | RARE Project on Vimeo.

To see the complete event agenda and full listing of sessions, visit the Global Genes Project’s information page here.

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