The nonprofit Global Genes, an organization for patients and families fighting rare and genetic diseases, is awarding more than $100,000 in travel stipends to help hundreds of patient advocates attend 5th Annual RARE Patient Advocacy Summit Sept. 22-23 in Huntington Beach, California.
After the summit, the 2016 Tribute to Champions of Hope will be presented by PRA Healthsciences. The annual event honors individuals for their outstanding courage in fighting for the more than 7,000 rare and genetic diseases, such as Friedreich’s ataxia (FA). Rare and genetic diseases are estimated to affect 1 in every 10 people in the U.S. and hundreds of millions worldwide.
“We have seen incredible growth in requests from patients and their families to participate at our annual summit and we are grateful to be able to offer this support,” Carrie Ostrea, Global Genes’ senior manager of patient advocacy, said in a press release. “This is an important time for Global Genes and our community to unite and provides patients and advocates with the opportunity to learn new skills and connect and share experiences.”
Many rare and genetic disease organizations will be represented at the RARE Patient Advocacy Summit, including those representing Friedreich’s ataxia. More than 80 speakers will talk about a range of topics, from funding early research to developing treatments, to advocating for specific disease issues. Attendees of the summit can expect to leave with creative ideas for next steps to take back to their communities and new tools to help them to increase advocacy efforts.
Notable speakers at this year’s summit include Robert Ring, PhD, former chief medical officer of Autism Speaks; Dr. Anthony Philippakis, MD, PhD, chief data officer of Broad Institute and Venture Partner at Google Ventures; Dr. Philip Reilly, MD, JD, author of “Orphan – The Quest to Save Children with Rare Genetic Disorders”; Dr. Petra Kaufmann, MD, director of the Office of Rare Diseases Research and Division of Clinical Innovation at the NIH’s National Center for Advancing Translational Sciences; and Dr. Eric Michael David, MD, JD, chief strategy officer EVP, Organovo.
“The Global Genes scholarship has allowed me to obtain the training, support, and inspiration I need to recharge and move forward each year,” said Andra Stratton, from Lipodystrophy United. “Because of their support, I have learned my voice matters.”
To register for the RARE Patient Advocacy Summit and the Tribute to Champions of Hope, both at the Hyatt Regency Resort & Spa in Huntington Beach, click here to be directed to the registration site.
The summit will be livestreamed so that advocates around the world can benefit from the event. More information about the livestream will be released in September.
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