Events

2024 RARE Advocacy Summit

September 26, 2024 – September 27, 2024

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Connect. Inspire. Learn

Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit.

This is an unparalleled opportunity to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change. This year, the Summit will be held in Kansas City, Missouri. Join us for networking, learning and inspiration.

2024 Speakers

Check back for information about speakers for the 2024 RARE Advocacy Summit!

A Look Back at the 2023 Patient Advocacy Summit

2023 Recap

Check out some stats from our event last year.

2023 Rare Advocacy Summit Stats

Thank You to Our Sponsors!

Champion Sponsor

Title Sponsors

Presenting Sponsor

pfizer

Gold Sponsors

Chiesi global rare diseases
SANOFI
Vertex

Silver Sponsors

Alliance Rx
Amicus Therapeutics
Avidity Biosciences
Jazz Pharmaceutical
Mallinckrodt Pharmaceuticals
pharming
Regeneron
Spark Therapeutics
ucb

Track Sponsors

BridgeBio
Catalyst pharmaceuticals
ovid
Sangamo Therapeutics

Partner Sponsor

Biogen
merck
moderna

Advocacy Support Sponsors

Blueprint Medicines
Chiesi global rare diseases
pharming
Ultragenyx
Vertex

Champions of Hope Support

Media Sponsor