Press Releases

Global Genes, PlatformQ Health to Launch with Live Coverage from the 2016 RARE Patient Advocacy Summit

September 18, 2016

Global Genes and PlatformQ Health are pleased to announce that the sold-out 5th Annual RARE Patient Advocacy Summit™ taking place in Huntington Beach, CA September 22 – 23 will be streamed live online at, the new rare disease educational site created in partnership between Global Genes and PlatformQ Health. Mindful of the many rare disease community members who can’t attend the Summit in person, RareUniversity will stream four topically aligned breakout tracks each day totaling over 70 hours of programming for free.

Register here for the live streams.

This year’s two-day RARE Summit features leading minds from across the rare disease landscape. Members of the rare disease community unable to attend in person will have direct access to expert presentations live and on demand, from guidance on the drug development pipeline and translational research updates to advice on building an army of advocates and supporters. Each day, four public, live streams will be available:

Day 1: Care & Support
Day 1: What You Need To Build a Disease Community
Day 1: Patient’s Role in Drug Discovery, Pre-Clinical Tools
Day 1: Science & Technology Updates

Day 2: Capacity Building
Day 2: Patient Activism
Day 2: Patient’s Role in Drug Discovery, Research & Clinical Trials
Day 2: Science & Technology Updates

RareUniversity is an educational platform purpose-built to bring together key stakeholders currently driving progress in rare disease education, research and development. Intended for patients, patient advocates and clinicians, RareUniversity is committed to providing Tethered Education™, an approach that meets the diverse needs of each group while aligning medical information and clinical research education across the community. The live streamed RARE Summit is just the beginning of the programs RareUniversity will offer.

“RareUniversity is both a response to the needs of the rare disease community and another stake in the ground regarding the future of medical education. Patients, clinicians, membership organizations, researchers and even industry need to be resources for each other and collaborators for better medical outcomes. This platform will facilitate these collaborations and build solidarity for families and the medical community,” says Robert Rosenbloom, CEO at PlatformQ Health.

“This collaboration is critical in two ways; first, it provides an opportunity for Global Genes to create an inclusive experience for patient advocates anywhere to participate in our highly anticipated annual RARE Patient Advocacy Summit. Second, this will feed important content into what will ultimately become one of the most compelling sources for rare disease education,” says Nicole Boice, CEO Global Genes. “The Rare University is a brainchild produced by the brilliant minds of our Corporate Alliance, and we are very grateful for their contributions.”

To learn more about RareUniversity and educational program sponsorship opportunities, visit

About Global Genes

Global Genes is a 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 Ribbon™, 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.

About RareUniversity and PlatformQ Health

PlatformQ Health is a leading online medical education event platform, with over a dozen therapeutically aligned websites. Holding over 100 CME/CE-accredited sessions a year, PlatformQ Health works in partnership with clinical and research centers of excellence and leading accrediting partners. RareUniversity and the parntership with Global Genes represents the next evolution of PlatformQ Health’s commitment to aligning the highest standard of medical education across the healthcare community including clinicians, patients, caretakers and patient advocates.