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Global Genes, the leading global advocacy non-profit organization for patients and families fighting rare and genetic diseases, today announced the organization is assisting hundreds of patient advocates with over $100,000 in travel stipends to attend the 5th Annual RARE Patient Advocacy SummitTM being held September 22-23 at the Hyatt Regency Resort & Spa in Huntington Beach, California. The 5th Annual RARE Patient Advocacy SummitTM will be followed by the 2016 Tribute to Champions of HopeTM presented by PRA Healthsciences, an annual event that honors individuals for outstanding feats of courage in fighting for the over 7,000 rare and genetic illnesses that are estimated to impact approximately 1 in 10 Americans and hundreds of millions globally. Register today.

“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,” said Carrie Ostrea, Senior Manager of Patient Advocacy, Global Genes. “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.”

sum84The 5th Annual RARE Patient Advocacy SummitTM will feature over 80 speakers presenting on a variety of topics ranging from funding early research to developing treatments to advocating for specific disease issues. Patients and families can expect to leave the Summit with actionable next steps to take back to their communities enabling them to increase individual advocacy efforts. Notable speakers at this year’s Summit include:

  • Robert Ring, PhD, former CMO, Autism Speaks
  • Anthony Philippakis, MD, PhD, Chief Data Officer, Broad Institute and Venture Partner, Google Ventures
  • Philip Reilly, MD, JD, Author of “Orphan – The Quest to Save Children with Rare Genetic Disorders”
  • Petra Kaufmann, MD, Director, Office of Rare Diseases Research and Division of Clinical Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)

● Eric Michael David, MD, JD, Chief Strategy Officer EVP, Organovo, Inc.

Numerous rare and genetic disease organizations will be represented including Atypical HUS, Barth Syndrome, Batten’s, Cushing’s, Cystic Fibrosis, Cystinosis, Gaucher, Huntington’s, Juvenile Dermatomyositis, Friedreich’s Ataxia, KCNQ2, Lipodystrophy, Myotubular Myopathy, NGLY1, Niemann Pick, Osteopetrosis, Sickle Cell, Spinal Muscular Atrophy, Turner Syndrome, Urea Cycle Disorder, and WAGR.

“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, Lipodystrophy United. “Because of their support, I have learned my voice matters.”

Global Genes will livestream the event allowing advocates to benefit from the conference from the comfort of their homes or workplace. Livestream information will be announced in September.

About Global Genes

Global Genes is the leading global advocacy non-profit organization for patients and families fighting rare and genetic diseases. Global Genes works to eliminate rare and genetic disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes RibbonTM, Global Genes is dedicated to uniting experts, advocates, patients and their families. The organization seeks to help find treatments and cures for the 7,000+ rare and genetic diseases that affect an estimated 30 million Americans and over 350 million people worldwide.

Media Contacts:

Ashley Eckenweiler
The ACE Agency
ashley@theaceagency.com
(949) 285-9239

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