Global Genes, a leading global advocacy organization for patients and families fighting rare and genetic diseases, and PlatformQ Health have announced the strategic partnership to develop a first of it's kind educational platform, RareUniversity. The goal of this new program is to equip advocates and clinicians with comprehensive tools to help navigate the complex world of rare disease education and advocacy. The Beta launch of the platform will coincide with the RARE Patient Advocacy Summit in Huntington Beach, California from September 22-23, 2016.
Rare disease affects 1 in 10 people in the US, and 350 million worldwide. While each disease is rare, about 80% is due to a genetic disorder. Together rare diseases define a group of over 7,300 ailments from Alzheimers to Zygomycosis.
Access to accurate information about rare disease is inconsistent and infrequent for patients and clinicians. With the community connecting globally across all disciplines, access is increasingly more difficult and has created significant barriers to progress. This collaboration intends to change that paradigm.
Global Genes and PlatformQ Health are proud to partner together to overcome this fundamental challenge, launching an interactive online rare disease medical education platform - RareUniversity. "RareU" will align and exponentially increase the availability of educational resources for patients, caregivers, advocates, clinicians, and organizations in the rare disease community. Both Global Genes and PlatformQ Health bring unique strengths to the partnership that compliment each other and will be the basis of this comprehensive educational tool.
"Education is at the core of what Global Genes is committed to providing to patients and caregivers. It is a catalyst for success and a driver of change," says Global Genes CEO, Nicole Boice. "In our desire to increase patient impact, we look to other innovators to help us grow to meet the increasing needs of this community. RareUniversity and our partnership with PlatformQ Health will help us meet and exceed these goals. We are honored to be collaborating and continuing to drive value for all of the rare disease stakeholders who need more insights and tools."
PlatformQ Health is a leading organization that provides live and on demand online continuing medical education to clinicians, patients and caregivers in a variety of therapeutic areas.
"Accurate and clinically valid education, including reporting on breakthroughs in research and development, is one of the most valuable tools anyone facing a rare disease can have," says Robert Rosenbloom, CEO of PlatformQ Health. "Together with Global Genes and the organizations they serve, RareUniversity will provide a trusted educational platform to measurably improve the state of rare disease education and advocacy."
RareUniversity.com is set to launch next month, at the RARE Patient Advocacy Summit, September 22-23, 2016 in Huntington Beach, California. Partnership and education support opportunities can be sent to: info@platformqhealth.com/.