2024 RARE Health Equity Forum

Through plenary sessions, networking and interactive table talks, RARE Health Equity Forum empowers attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community.

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

About the RARE Health Equity Forum

The RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation.

In its fourth year, the theme of the event will be “Together in Equity, Driving Change”. Through plenary sessions, networking and interactive table talks, the event empowers attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community. 

Reception held at the National Center for Civil & Human Rights in Atlanta, Georgia during the 2022 Health Equity Summit

2024 RARE Health Equity Forum Agenda at a Glance

Agenda Subject to Change; All times are Central Standard Time

Saturday, September 28

Registration Desk Open: 7am – 5pm
Breakfast Buffet: 8am – 9am
RARE Health Equity Forum Keynote Address: 9am – 9:30am
Sessions: 9:30am – 5:30pm
Lunch and Table Talks: 12pm – 2pm
Week in RARE Closing Reception: 5:30pm – 7:30pm


Check back for information about speakers for the 2024 RARE Health Equity Forum!

Siwaar Abouhala

Broad Institute

Claudia Conzaga-Jauregui, Ph.D.

International Laboratory for Human Genome Research, UNAM

Suzanne Edison

CureJM Foundation

Abdallah (Abe) Elias, M.D., F.A.C.M.G.

Shodair Children’s Hospital

Nadia A. Falah, M.D.

Johns Hopkins All Children’s Hospital

Melissa Haendel, Ph.D.

University of North Carolina Chapel Hill

Cecile Jones

Richie Kahn

Canary Advisors

Rivkah Beth Medow


Randi Rader

Fatima Scipione

Blueprint Medicines

Tanvee Varma, M.D.

Brigham and Women’s Hospital

Michele Wright, Ph.D.

National Organization of African Americans with Cystic Fibrosis (NOAACF)

A Look Back at the 2023 RARE Health Equity Forum

2023 Recap

Check out some stats from our event last year

2023 Health Equity Forum Stats

Interested in supporting the 2024 RARE Health Equity Forum?

Title Sponsor


Platinum Sponsor

Gold Sponsor


Silver Sponsors

Chiesi global rare diseases

Bronze Sponsors

Amicus Therapeutics
Blueprint Medicines
Mallinckrodt Pharmaceuticals

Partner Sponsors

Avidity Biosciences
Catalyst pharmaceuticals
travere logo

RARE Champions of Hope Reception Sponsor


Need more information about Week In RARE?

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

Stay Connected

Sign up for updates straight to your inbox.