Attended the 2014 Global Genes Summit and Gala? Share Your Story

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Each year Global Genes puts together a two day Patient Advocacy Summit and our Tribute to Champions of Hope Gala. For the Global Genes team it means having the opportunity to unite a community and share resources to educate and empower patients. We were honored to have the chance to meet and interact with all of you. We've recieved an incredible response from those of you who attended and we would … [more here...]

Photo & Video Roundup of 2014 Global Genes Summit and Gala Events

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We would like to extend a very heartfelt THANK YOU to everyone who spent the last few days with us online and in-person at the 3rd Annual RARE Patient … [more here...]

Jacob with Hyperekplexia Experience Extreme Stiffness

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A 4-year-old boy has been diagnosed with a rare, life-threatening illness that means he could literally be scared stiff at any moment, The Chronicle … [more here...]

Rare Disease Biotech Xenon Pharmaceuticals Files for $52 million IPO


Xenon Pharmaceuticals, an early-stage biotech with a gene therapy discovery platform for rare diseases, filed on Wednesday with the SEC to raise up to … [more here...]

The Heart and Smile of a Champion: Brigitte with Noonan Syndrome


For eight year old Brigitte Kaiser, the Tewksbury Youth Football program was more than just a fun thing to do after school. It was a chance for her … [more here...]

Growth Awareness Week Starts September 15th


Organization: The MAGIC Foundation Submitted by: Teresa Tucker People from all corners of the world unite online and change their Facebook profile … [more here...]

Day 2: Patient Advocacy Summit 2014

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After an extraordinary first day with fantastic speakers and a packed room, Global Genes prepares for day two of their annual Patient Advocacy … [more here...]