Events & Programs

RARE Drug Development Symposium

Celebrates 10 Years!

September 9 - 11, 2026, Boston, MA

The landscape of medical research is shifting: rare disease patient advocates are no longer just participants, they are the architects of discovery. Driven by an urgent need for life-saving treatments, these leaders are spearheading research initiatives with unprecedented momentum.

To support this movement, Global Genes, in partnership with Boston Children’s Hospital and the Termeer Institute, will be hosting the annual RARE Drug Development Symposium. 

Returning to Boston for its second year following a sold-out 2025 event, this symposium is specifically designed to equip advocates, industry leaders, and academic experts with the tools to navigate early-stage research with clinical precision and confidence. Registration will open in May!

News & Announcements

Please Welcome Our 11 Newest

Global Advocacy Alliance Members

Accelerating Rare Disease Research Through Collaboration: Global Genes and Notre Dame Launch the Research Acceleration Program

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SLEEP Advances: Patient-reported outcome measures in central disorders of hypersomnolence: consensus of a sleep consortium/RARE-X expert working group 

Read More

Rare Voices:
Stories from the Rare Community

Rare Disease Week 2026

Rare Disease week is held on the last week of February each year,
an annual observance to raise awareness for 400 million people
affected by rare disease globally.
Global Genes celebrated across the country this year!

Boston

Kansas City

San Diego

Seattle

Washington, DC

Partner Spotlight:
News from Our Rare Allies

GeneSprout Launches The Genetic Access Initiative to Expand Access to Whole Genome Sequencing for Children

Recommendations for Expanding Regulatory Agility and Evidentiary Integrity in Developing Treatments for Rare Diseases

Resources

Use the RARE Clinical Trials Hub
A new way for the rare community to easily learn about clinical trial opportunities.
Our partners can take advantage of this
new recruitment too.

How a Foundation Built Its Own Drug Program for an Ultra-Rare Disease

Listen Now

Your Watch List is Here!

Catch up on all the sessions.