Archived Events

2022 RARE Health Equity Summit

The RARE Health Equity Forum, hosted in partnership with the Rare Disease Diversity Coalition (RDDC) convenes rare disease stakeholders to identify collaborative efforts to address inequities in the care of patients with rare diseases.

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Partners in Action

This event provided attendees with strategic insights and tools to empower and equip them to address racial, ethnic, gender, socioeconomic, and other disparities. The outcomes of the RARE Health Equity Summit helped attendees advocate for more inclusion in the rare disease community, and provided relevant resources and information to support underrepresented and/or minoritized patients.

Sessions focused on:

  • reducing racial disparities in care
  • building more inclusive research programs
  • addressing bias and barriers to genetic testing
  • learning cultural humility to create an inclusive and equitable environment for all members of the rare disease community
US Congressman GK Butterfield speaks at the 2022 Health Equity Summit in Atlanta, Georgia

Watch Sessions from the 2022 RARE Health Equity Summit

Theresa tha SONGBIRD

Theresa tha SONGBIRD gave a riveting spoken word performance and recited a poem entitled “Rare Champions” at the 2022 RARE Health Equity Summit.

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Addressing Bias and Barriers to Genetic Testing

Genetics and genomics research historically has not been inclusive of populations of color. It’s time to start over with a more inclusive population in genetic testing. This session talks about how.

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Remarks from G.K. Butterfield

Congressman G. K. Butterfield spoke about legislation he has endorsed and pushed through during almost two decades in Congress, and what he envisions for the future of health equity of rare disease legislation. 

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Effective Communication with Patient Partners

How can industry partners and researchers become more patient-centric? This session discusses the needs of patients and advocates, and when to bring patients into the conversation, and specifically how to talk to underserved populations who already have a mistrust of industry.

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Policy to Address Important Rare Disease and Health Equity Issues

Delays in diagnosis, clinical trial access, access to treatment, implicit bias in diagnosis, clinical trials and treatment. How can policy close these gaps in health inequities in rare disease? How can advocates help in implementing changes in policy?

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Medical Gaslighting

This breakout addresses the barriers that rare disease patients face when speaking to healthcare providers, including dismissal of health concerns and symptoms, accessing the best medications and treatment, and the challenges underserved populations in particular may encounter.

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Day 1 Closing Remarks from Eve Dryer and Kevin Kimble

Eve Dryer recaps the sessions from the first day of the 2022 Health Equity Summit and Kevin Kimble follows up with how the Southern Christian Leadership Council can help to solve health equity issues.

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Experience Matters: The Importance of Rare Disease Education in Medicine

Advocates, medical students, and a healthcare educator discuss how medical education can address health equity in the rare disease community.

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The Diversity of Diversity

How do the challenges in rare disease diversity differ among various communities? Panelists from industry and the FDA discuss how these barriers differ by population, and what solutions may exist.

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Health Equity to Advance Medical Product Development for Rare Diseases

The opening keynote for Health Equity Summit was led by experts from the U.S. Food and Drug Administration, where discussion included diversifying clinical trial participation and gathering more equitable data.

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Global Equity & Inclusion: Access to Diagnostic Tools & Expertise, Clinical Trials & Treatments

What are some of the barriers in rare disease health equity that are found at a global level? Topics include availability of healthcare providers, working alongside cultural and traditional healers, and financing advanced healthcare needs.

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Day 2 Welcome Remarks from Steve Scalia and Jevon Gibson

Steve Scalia talks about partnerships and collaboration of industry, advocates and researchers, while Jevon Gibson relates how empathy can help bridge gaps in health equity and rare disease.

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Underrepresentation in Rare Disease Research – Driving Promise to Practice

This session explores the various ways that research can be more inclusive, what barriers exist that may exclude marginalized populations, and how those barriers can be eliminated.

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Closing Keynote: Removing the Burden in Clinical Care of Rare Diseases in Low-Resource Settings

Using Ghana as an example, Dr. Charles Hammond talks about how countries with low and middle level resources remove hurdles to receiving diagnosis and treatments for rare diseases.

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Hear from experts who were at 2022 RARE Health Equity Summit

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

A Look Back at the 2022 RARE Health Equity Summit

2022 Recap

Check out some stats from the 2022 event.

2023 RARE Drug Development Symposium Stats