Former Olympian Gail Devers, Emily Rapp Black, Jim Geraghty Among Speakers Announced for Global Genes 11th Annual RARE Patient Advocacy Summit

August 27, 2022

ALISO VIEJO, Calif.–(BUSINESS WIRE)–Global Genes, a leading rare disease patient advocacy organization, today announced the 2022 RARE Patient Advocacy Summit. In its 11th year, the Summit brings together rare disease patients, healthcare professionals, researchers, advocates and allies to connect, share experiences and resources, and gather insights about the latest rare disease innovations. The Summit will be held September 12-14, 2022, both in-person in San Diego, CA, and virtually.

This year’s Summit will focus on a wide range of discussions that aim to help individuals and organizations build meaningful skills, provide support and guidance for rare disease communities, advocates and families. Sessions will cover topics such as the sibling experience, fundraising best practices, preventing burnout, new data & technology and more.

“We are living in a time where connection is vitally important,” said Craig Martin, CEO of Global Genes. “For people living with any of the 10,000+ rare diseases, it’s often difficult to find support, experts, or community, and to have your voice heard. Our Summit gathers advocates, caregivers and individuals looking to connect with others from various backgrounds and sectors tied to rare disease and who can help or guide them. We provide a unique and welcoming experience where those connections happen, and people are empowered to take the next best steps forward in their journeys.”

Among the sessions in this year’s Summit, key features include:

● Keynote speakers

○ Three time Olympian Gail Devers, who has been living with Thyroid Eye Disease (TED)

○ NYT best selling writer Emily Rapp Black, whose child was diagnosed at 9 months old with Tay-Sachs and passed away just before he turned 3.

● Storyteller Alley, a dedicated space within the Summit designed to help teach attendees the power of storytelling to better assist in communication about their organization, goals and mission.

● Networking opportunities throughout the Summit, including an interactive program where advocacy organization leaders can engage, learn, build off one another, and collaborate with peer organizations on a number of different areas of expertise and topics of interest.

● Leaders who have made a significant impact in advocacy, industry and medical care, as well as up-and-coming rare disease leaders will be honored with the 2022 Champions of Hope Award.

The 11th annual RARE Patient Advocacy Summit is possible thanks to sponsors including Horizon TherapeuticsGenentechTravere Therapeutics and Pfizer, Inc. For more information and to register please visit:

About Global Genes

Global Genes is a leading non-profit organization dedicated to overcoming challenges facing the more than 400 million people worldwide living with rare diseases. We are a globally connected, collaborative, multi-stakeholder community that supports global innovation and equitable access to diagnosis, treatment, services, care and participation in research and advocacy. Together with our partners, we provide programs, resources, tools and insights to inform, equip and empower patients, caregivers and advocates to drive progress within and across 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.


Global Genes:
Laura Vinci
Finn Partners
[email protected]

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