RARE Health Equity Forum

September 18, 2023 – September 19, 2023

Register now View Agenda

About the Health Equity Forum

The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways in which we can better serve marginalized populations within the rare disease community. In its third year, the event will be focused on the theme of “Equity In Action”.

Over the past two years we have worked as a community to learn about, and discuss the biases, barriers and challenges that marginalized communities face within rare disease. We have recognized the need to work together to bring forward more meaningful approaches to tackling these challenges. This year, sessions will provide attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.

2023 Health Equity Forum Agenda

Through interactive plenary sessions and networking, this event empowers attendees to advocate for more inclusion in the rare disease community and provides them with strategic insights and tools to support underserved and/or underrepresented patients.

Detailed agenda will be available in June.

What did those who attended the 2022 event have to say?

“This whole event was amazing and so well organized. Usually there are a couple of sessions I’m not interested in but I never wanted to leave because every session was so good and interesting!”
– Nicole Kressin, Rare Diseases Clinical Research Network 

“One of the best meetings I’ve been to this year – I was really impressed by the level of presentations and by how much I learned and how much others learned.”
– Eve Dryer, Travere Therapeutics

“Thank you for doing this. I’ve met so many wonderful people –
it gives me hope!”
– Yasmina Halim, Patient Advocate

US Congressman GK Butterfield speaks at the 2022 Health Equity Summit in Atlanta, Georgia


We will be announcing the speakers for the 2023 RARE Health Equity Forum after registration launches.
Check back for a complete list of speakers soon!

Advocate Support Program

The Advocate Support Program is offered to offset the cost associated with attending the 2023 RARE Health Equity Forum. Advocate Support will cover a portion of your meeting and travel expenses for the conference.

Advocate Support (formerly known as stipends) is available to individual patients, close family and friends of advocates in the rare disease community, or staff (paid/volunteer) of rare disease nonprofit organizations or support groups.  

Poster Submissions

Posters provide an opportunity for you to share the work of your organization, team or community with a larger audience of rare disease stakeholders from advocacy, research and industry. Showcasing ongoing or completed projects often can provide new connections/opportunities to meet new collaborators and/or potential funders. If you are interested in submitting a poster, click the button below to see poster guidelines for the RARE Health Equity Forum.

Plan Your Visit

Book your hotel room before August 11th to secure a special conference rate. All conference room block reservations are in the Marina Tower.

Airfare Discounts: Delta and United are partnering with Global Genes to offer attendees discounted airfare!

Delta: Call Delta Meeting Network® at 1.800.328.1111* Monday–Friday, 8:00 a.m. – 6:30 p.m. (EST) and refer to Meeting Event Code NM2KV or click the button below.

United: Call United Meetings Reservation Desk Monday – Friday at (800) 426-1122 and use discount code ZNJJ289948 or click the button below.

A Look Back at the 2022 RARE Health Equity Summit

2022 Recap

Check out some stats from our event last year

2022 Health Equity Summit Stats

Thank you to our sponsors!

Presenting Sponsor

Title Sponsor

Gold Sponsor

Silver Sponsor

Bronze Sponsor

Avidity Biosciences

Partner Sponsor


Patient Advocate Sponsor

Chiesi global rare diseases

Interested in supporting the 2023 RARE Health Equity Forum?