Get Your RARE July Updates! 

Hello Devil! This is the July edition of the 2017 Global Genes Newsletter, your source for RARE news.
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JULY 1, 2017
RARE Patient Advocacy Summit Attendee Page LIVE
Do you know who will be in attendance at this year's RARE Patient Advocacy Summit? Our interactive attendee page is now LIVE. Don't miss your chance to Connect, Collaborate, and Activate September 14-15 at Hotel Irvine in Irvine, Ca with fellow advocates, drivers, and innovators in the Rare Disease Community as they uniquely share their experience, knowledge, and expertise as conference presenters and or participants.
RARE Champion of Hope Honorees Selected
Global Genes is pleased to announce the 2017 RARE Champion of Hope Honorees! Thank you for your thoughtful nominations. Because of you, we have the opportunity to honor the commitment and dedication of these individuals. The development of treatments, therapeutics, and levels of care they have developed have improved the lives of those who have been touched by rare disease. 
Help Global Genes Raise Up To $10,000!
Text “RARE” to 565-12, and Horizon Pharmaceuticals will donate $1 (up to $10,000) to Global Genes. Participants will receive a return text with a link to a mobile website where they can upload a photo with the name of the rare disease they support. Select photos will be featured on the RAREis Instagram page, and individuals are encouraged to post their photo and message of support on social media channels using the hashtag “#RAREis”.
RARE Partnering and Investor

Global Genes is hosting the first-ever rare disease partnering event to accelerate partnerships and catalyze innovation in rare disease drug development. The Forum will offer networking facilitated by EBD Group’s 1:1 partnering platform, expert panels, company pitch presentations, and a Shark Tank-style competition featuring early stage companies vying for a prize of valuable goods and services. Please Register or submit you Presenter Application. 
Register Now
Fragile X Syndrome Awareness

Dr. Michael Tranfaglia serves as Medical Director and Chief Scientific Officer of FRAXA, a nonprofit organization based in Newburyport, Massachusetts, which is committed to finding a cure for fragile X syndrome. Dr. Tranfaglia is responsible for coordinating the FRAXA Foundation’s research strategy and works with university and industry scientists to develop new therapeutic agents for fragile X, autism, and related developmental disorders. He has two children who were diagnosed with fragile X syndrome and has dedicated his life's work to supporting the community.
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