Global Genes’ RARE Advocacy Exchange is Underway, Uniting the Global Rare Disease Community Leaders

Global Genes’ RARE Advocacy Exchange is Underway, Uniting the Global Rare Disease Community Leaders

WASHINGTON, D.C. July 2, 2025 -Global Genes, a leading rare disease patient advocacy organization, is thrilled to report that the RARE Advocacy Exchange, which launched this March, is bringing together patients, caregivers, advocacy leaders, researchers, and clinicians from around the world.. Building on Global Genes’ long-standing commitment to collaboration and capacity-building, this virtual event series, made up of eight free sessions, is designed to empower participants with the leadership skills to drive change within their community. From seasoned leaders to those new in the rare disease journey, this series allows them to connect, share best practices, and learn from one another in an effort to improve the lives of individuals and families affected by rare diseases.

In addition to the travel and cost barriers removed through the virtual exchange, there is additional focus on extending the life of the information and resources shared in a variety of methods. “As a rare disease caregiver and Menkes Syndrome parent I can attest to the intense feelings of time-constraint. While attending an in person event for rare disease education has tremendous value, it can be daunting if not impossible to make time for the travel and to arrange for a caregiver to stand in,” says Daniel DeFabio, Global Genes’ Director of Community Engagement and Education, “Having these informative sessions available as live Zoom meetings, or recordings to rewatch at a later time or even as a podcast to listen to on the go can reduce the challenges of fitting these into our already overloaded schedules.”

Full video recordings of each session are available for replay or to share with others on YouTube and Global Genes’ website, along with session overviews, key takeaways, and additional resources. Short clips, highlighting key takeaways are also curated and distributed on social media channels to further extend reach and engagement. 

Many sessions are supported by accompanying “Quick Guides” – web-based resources that include practical tips, lived experience stories, and links to relevant toolkits, articles, and additional media.

New this year, the RARE Advocacy Exchange is leveraging the appeal of popular rare disease podcast hosts to create a novel distribution model for some of the session content. These women – leaders in the rare disease community, advocates, rare moms, and gifted interviewers – have been selected to moderate several key sessions. Each host receives the audio recording of their moderated session to transform it into unique podcast episode for their show, bringing these critical conversations to a broader audience, including those who may not yet be connected with Global Genes. Examples include Kara Ryska of Special Needs Moms Podcast, Jillian Arnold of Confessions of a Rare Disease Mama, Effie Parks of Once Upon a Gene, and Jessica Fein of I Don’t Know How You Do It.

The RARE Advocacy Exchange has already hosted sessions featuring insights from leading leadership experts on everything from building effective patient leadership strategies to initiating innovative fundraising opportunities. Upcoming interactive sessions and discussions will focus on areas such as collaboration and cooperation, interacting with the FDA, precision diagnoses, grief, and knowing your RARE rights. By combining these expert-led presentations with skill-building and community-driven dialogues and collaborative breakout rooms, the sessions ensure advocates remain equipped and connected no matter what stage of their journey, from diagnosis through long-term care.

“We believe that an open, collaborative environment is essential for accelerating rare disease research and care,” said Charlene Son Rigby, CEO of Global Genes. “Now that the RARE Advocacy Exchange has begun, we’re seeing advocates, patients, and stakeholders come together to learn from each other and drive progress in their communities. By implementing a year-long free virtual exchange, we are meeting patients and caregivers where they are at and reducing the burden of travel, cost, and time away from treatments and family.”

Registration and More Information

The RARE Advocacy Exchange remains open for registration—anyone interested in attending this year-long event can visit to register:
https://globalgenes.org/rare-advocacy-exchange/

The RARE Advocacy Exchange is generously supported by the following sponsors, whose commitment helps make events like these free and accessible to the rare disease community:

Amgen Rare Disease, Genentech, UCB, Alexion, Chiesi Global Rare Diseases, Novartis, Pfizer, Acadia, Amicus, Biocryst, Blueprint Medicines, Jazz Pharmaceuticals, Mallinckrodt, Merck, Regeneron, Sanofi, Takeda, Avidity Biosciences, Biogen, BridgeBio, Catalyst, GeneDX, Harmony Biosciences, Ipsen, Pharming, Spark, Travere, Ultragenyx Pharmaceuticals, Vertex, Biotechnology Innovation Organization (BIO), Insmed, SpringWorks.

Their ongoing partnership underscores a shared dedication to enhancing collaboration, patient engagement, and critical breakthroughs in rare disease research and care.

About Global Genes

Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services that accelerate their path from early support and awareness through research readiness. Using a collaborative approach involving biopharma, researchers, and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative, patient-driven, open-data access initiative for rare diseases globally.

For media inquiries, please contact:
Lauren Alford
Global Genes
(949) 248-7273
[email protected]