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

May 26, 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, GSKPharma llc, 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.
About Global Genes®
Guided by its mission to eliminate the challenges of rare disease, Global Genes® is a leading rare disease patient advocacy organization with worldwide reach that serves and promotes the needs of patients and families touched by rare and genetic diseases. Since 2009, under the unifying symbol of HOPE and the Blue Denim Genes Ribbons®, Global Genes® has been building awareness, developing patient-focused education and advocacy tools, and funding patient care programs and early investigative research. For more information visit Join the RARE conversation! Follow @GlobalGenes on social media. 
About Horizon Pharma
Horizon Pharma plc is a biopharmaceutical company focused on improving patients’ lives by identifying, developing, acquiring and commercializing differentiated and accessible medicines that address unmet medical needs.  The Company markets 11 medicines through its orphan, rheumatology and primary care business units. Visit the RAREis Instagram page to learn more about Horizon’s efforts to elevate the faces and stories of the rare disease community. For more information about Horizon, visit  Follow @HZNPplc on Twitter or view careers on our LinkedIn page.
About PRA Health Sciences
PRA is one of the world’s leading global CROs by revenue, providing outsourced clinical development services to the biotechnology and pharmaceutical industries. PRA’s global clinical development platform includes more than 70 offices across North AmericaEuropeAsiaLatin AmericaSouth AfricaAustralia and the Middle East and over 13,300 employees worldwide. Since 2000, PRA has performed approximately 3,500 clinical trials worldwide. PRA has participated in the pivotal or supportive trials that led to FDA or international regulatory approval of more than 70 drugs. To learn more about PRA, visit

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