Event

2024 RARE Advocacy Summit

RARE Advocacy Summit is an unparalleled opportunity for advocates to forge meaningful connections with others in the rare disease community for future collaboration.

Join us in Kansas City, September 25-28 for Week in RARE for the opportunity to connect, inspire and learn.

Register Now About Week in RARE

There’s no place like Hope.

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 to work together to build a path to hope. This is an unparalleled opportunity for advocates, whether new or veteran, 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 improve care and accelerate change.

This year, the Summit will be held in Kansas City, Missouri. Join us for networking, learning and inspiration.

2024 RARE Advocacy Summit Agenda at a Glance

Agenda Subject to Change; All times are Central Standard Time

Thursday, September 26

Registration Desk Open: 7am – 5pm
Breakfast Buffet: 7:30am – 8:45am
Opening Keynote: 9am – 10am
Breakout Sessions: 9:15am – 4:15pm
Expert Office Hours: By Appointment Only
Exhibits Open: 9am – 5pm
Lunch Buffet: 12:30pm – 1:50pm
Closing Plenary 4:30pm – 5:30pm
Welcome Reception hosted by RareKC: 5:30pm – 8:30pm

Friday, September 27

Breakfast Buffet: 7:30am – 8:45am
Opening Plenary: 9am – 10am
Breakout Sessions: 9:15am – 4:15pm
Expert Office Hours: By Appointment Only
Exhibits Open: 9am – 5pm
Lunch Buffet: 12:30pm – 1:50pm
Closing Plenary: 4:30pm – 5:30pm
Champions of Hope Awards: 5:30pm – 6:30pm
Champions of Hope Reception: 6:30pm – 8:30pm

2024 Speakers

Mackenzie Abramson

Global Genes

Dustin Baldridge, M.D., Ph.D.

Washington University in St. Louis

Raymond Belanger-Deloge, M.S., C.G.C.

Boston Children’s Hospital Rosamund Stone Zander Translational Neuroscience Center

Lara Bloom

The Ehlers-Danlos Society

Wendy Chung, M.D., Ph.D.

Boston Children’s Hospital

John F. Crowley, J.D.

Biotechnology Innovation Organization (BIO)

Suzanne Edison

CureJM Foundation

Jessica Fein

Mitoaction

Kendra Gottsleben

Center for Disabilities

James Griffin

EveryLife Foundation

Christina Gurnett, M.D., Ph.D.

Washington University in St Louis

Melissa Haendel, Ph.D.

University of North Carolina Chapel Hill

Michele Herndon, M.S.N., R.N.

Undiagnosed Diseases Network Foundation

Michael Hund

EB Research Partnership

Erica Jones

Simons Searchlight

Richie Kahn

Canary Advisors

Jeff Levenson, D.D.S.

Adult Polyglucosan Body Disease Research Foundation

Lori Renna Linton

European Reference Network for Rare Neurological Diseases (ERN-RND)

Kasha Morris, M.S.

TANGO2 Research Foundation

Megan Nolan

Rare Parenting Magazine

Stephanie Riordan

EveryLife Foundation

Claudia Parker

Claudia Parker Portraits

Charlene Son Rigby

Global Genes

Ashley Point

Koolen-de Vries Syndrome Foundation

James G. Robinson

Author, More Than We Expected

Abigail Sveden, M.S., C.G.C.

Boston Children’s Hospital

Shannon von Felden, M.P.P.

EveryLife Foundation

John Wilbanks

Broad Institute

A Look Back at the 2023 RARE Advocacy Summit

2023 Recap

Check out some stats from our event last year.

2023 Rare Advocacy Summit Stats

Interested in supporting the 2024 RARE Advocacy Summit?

Amgen

Platinum Sponsor


Gold Sponsor

ucb

Silver Sponsors

Chiesi global rare diseases

Bronze Sponsors

Amicus Therapeutics
Biocryst
Blueprint Medicines
Mallinckrodt Pharmaceuticals
Regeneron
SANOFI

Partner Sponsors

Avidity Biosciences
Biogen
BridgeBio
Catalyst pharmaceuticals
Harmony-Bio
pharming
travere logo

RARE Champions of Hope Reception Sponsor

Amgen

Need more information about Week In RARE?

Questions about attending, receiving advocate support, submitting a poster, or exhibiting at the event?

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