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Global Genes Convenes Rare Disease Leaders at “Pivotal Moment for Progress”

August 31, 2021

Global Genes Convenes Rare Disease Leaders at “Pivotal Moment for Progress”

RARE Patient Advocacy Summit Marks a Decade of Collaboration, Looks Forward with Hope and Caution to a Vastly Different Set of Opportunities in Rare Disease

ALISO VIEJO, Calif.–(BUSINESS WIRE)–Global Genes, a leading international rare patient advocacy organization, is pleased to announce the 2021 RARE Patient Advocacy Summit, one of the world’s largest gatherings of rare disease patients, healthcare professionals, researchers, advocates and allies, which will take place virtually September 27-29, 2021.

This virtual event will provide participants with the opportunity to gain insight into the latest rare disease innovations, what’s on the horizon, and what individuals, advocacy leaders and communities can do to accelerate progress. In addition, the RARE Patient Advocacy Summit creates opportunities for stakeholders in rare diseases to connect, work together, share information, knowledge and resources, and build relationships that can continue to support and sustain collaboration beyond the Summit.

“This is a pivotal moment for progress in rare disease,” said Craig Martin, CEO of Global Genes. “We are excited to see numerous promising advancements in science and technology, which are leading us toward better understanding, diagnosis and treatment of rare diseases. Yet we also need to work together now to ensure that these innovations can inclusively and equitably benefit patients around the world as they become available. The RARE Patient Advocacy Summit provides an opportunity for the community to learn, connect and engage around topics and initiatives of importance.”

Key features of this year’s Summit include:

  • Fyodor D. Urnov, PhD, Scientific Director of Technology and Translation at the Innovative Genomics Institute and a professor at University of California (UC), Berkeley, will deliver the keynote presentation, entitled “On the Cusp of Cures — Potential, Pragmatism and Progress in Genomic Science.” Dr. Urnov will focus on the importance of improving efficiency, delivery and regulatory mechanisms for gene-based medicines
  • For the first time, Global Genes will host the international regional meetings from Southeast Asia, West Africa, and Australia, providing an opportunity for global attendees to connect with peers in a new way
  • Global Genes is also proudly partnering with The Disorder Channel for the second year to host “RARE Together, Watch Together: Film Selections from The Disorder Channel”, followed by a panel discussion on Monday, September 27 focused on the usefulness of films and videos as rare disease advocacy and awareness tools
  • Throughout the event, participants will be able to connect with their peers online, engage in question and answer sessions and interact through a virtual exhibit hall

Global Genes would like to thank our excellent and dedicated team members, the speakers who’ve chosen to share their time and expertise with the community, and all of their supporters and partners of the 2021 RARE Patient Advocacy Summit, including Champion Sponsor, Horizon Therapeutics, Title Sponsor, Genentech, and Platinum Sponsors, Pfizer, Inc. and Janssen.

For more information and to register, please visit:

About Global Genes®

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.