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Global Genes® to Host 6th Annual Rare Patient Advocacy Summit September 14 – 15, 2017, Hotel Irvine, Irvine, California

Global Genes® to Host 6th Annual Rare Patient Advocacy Summit September 14 – 15, 2017, Hotel Irvine, Irvine, California

Simon Wheatcroft and Christopher P. Austin MD announced as 2017 Keynote Speakers

Presenter from the 2016 RARE Patient Advocacy Summit

ALISO VIEJO, Calif. – May 25, 2017 – On September 14-15, 2017, more than 700 rare disease stakeholders from around the globe will gather at Hotel Irvine in Irvine, California for the 6th Annual Global Genes® RARE Patient Advocacy Summit. The annual event brings together patients, caregivers, advocates, and rare disease stakeholders, to learn, connect, share, and partner.

Global Genes® is thrilled to announce that the 2017 Keynote Speakers are Simon Wheatcroft, Adventurer, Technologist, and Retinitis Pigmentosa patient, and Christopher P. Austin, MD, Director, National Center for Advancing Translational Sciences, NIH.

More than 90 speakers are expected to participate in the RARE Patient Advocacy Summit, and the agenda will feature presentations that will help attendees navigate the complex world of rare disease. Highlighted sessions include: “Beyond Diagnosis: Working with a Genetic Counselor During Your Rare Journey,” “Drug Development Pathway,” and “How Digital Health Will Transform Rare Disease Clinical Trials.”

The RARE Patient Advocacy Summit is a source of motivation and activation for families whose lives have been affected by rare disease. Annually, corporate stakeholders attend the event and become immersed in rare disease advocacy and gain valuable knowledge on patient and caregiver perspectives.

Global Genes® is pleased to welcome Horizon Pharma, PRA Health Sciences, and Shire as Title Sponsors for the 2017 Rare Patient Advocacy Summit. To date, Summit Sponsors include: Jazz Pharmaceuticals, Retrophin, Illumina Inc., Alnylam Pharmaceuticals, BIO Biotechnology Innovation Organization, Akcea Therapeutics, Alexion Pharmaceuticals Inc., Mallinckrodt Pharmaceuticals, Novartis Pharmaceuticals, Pfizer, Ultragenyx, AveXis, BioMarin, GSK, Vertex Pharmaceuticals, Leadiant Biosciences, Biogen, Barrow Neurological Foundation, Recordati, and Intercept Pharmaceuticals. 

For more information and to register for the RARE Patient Advocacy Summit visit Rare disease patients can apply for a travel stipend to attend. To learn more about Sponsorship opportunities, follow this link.

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