Second Annual RARE Health Equity Summit Addresses Gaps in Access, Shares Approaches to Build Inclusiveness in Underserved Communities

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Global Genes , a leading rare disease advocacy organization, will hold its second annual RARE Health Equity Summit in partnership with the Rare Disease Diversity Coalition (RDDC).

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Wednesday, October 5, 2022
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Medical Devices, General Health, Professional Services, Public Policy, Government, Genetics, DEI (Diversity, Equity and Inclusion), Clinical Trials, FDA, Media, Biotechnology, Health, White House, Federal Government, Communications, Social Services, Social Activism, Pharmaceutical, Oncology, Doctor of Pharmacy, Caregiver, Color, Global Genes, Movement, Master of Philosophy, Disease, Technology, JD, Senior lecturer, MS, Hope, Dentistry, Diagnosis, Gaps, University of Science and Technology, Diversity, University of Aberdeen School of Medicine and Dentistry, Patient, Bias, Health equity, MBA, Love, MPH, Partnership, History, Degenerative disease, Commissioner, Solution, Food and Drug Administration, Industry, Health, DO, Rare disease, National Center for Advancing Translational Sciences, CEO, FTSE Global Equity Index Series, Summit, Treatment, Genetic testing, Interim, Environment, Coalition, National Center for Civil and Human Rights, Artifact, FDA, School, National Institute on Minority Health and Health Disparities, Medical device, Vaccine, MD
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GLOBAL GENES, RDDC
Summary
Key Points: 
  • Global Genes , a leading rare disease advocacy organization, will hold its second annual RARE Health Equity Summit in partnership with the Rare Disease Diversity Coalition (RDDC).
  • The event includes speakers from the FDA, community and patient organizations, academia and industry and will discuss approaches to address racial, ethnic, gender, socioeconomic and other disparities affecting rare disease communities.
  • The takeaways from last years inaugural Health Equity Summit highlighted the work that we must do as a community to break down barriers.
  • Black Womens Health Imperative (BWHI) launched the Rare Disease Diversity Coalition (RDDC) to address the extraordinary challenges faced by rare disease patients of color.


Global Genes, a leading rare disease advocacy organization, will hold its second annual RARE Health Equity Summit in partnership with the Rare Disease Diversity Coalition (RDDC). The event includes speakers from the FDA, community and patient organizations, academia and industry and will discuss approaches to address racial, ethnic, gender, socioeconomic and other disparities affecting rare disease communities. The event is being held November 9-11, 2022, in Atlanta, GA, and online.

On Thursday, November 10th, Global Genes and RDDC will also host a reception at the National Center for Civil and Human Rights to network with their peers while immersed in the history of the U.S. civil rights movement, stories from the struggle for human rights around the world today, and artifacts of Dr. Martin Luther King, Jr.

The overarching theme of this year’s Summit is “Partners in Action.” All stakeholders in the rare disease space – advocates, caregivers, patients, industry, researchers, or healthcare professionals – are working towards the common goal of improving the lives of people living with a rare condition. Sessions will focus on how we can work in partnership to reduce racial disparities in care, build more inclusive research programs, address bias and barriers to genetic testing, and understand cultural humility to create an inclusive and equitable environment for all members of the rare disease community.

“It’s unfair and, frankly, inhumane that people are made to suffer because of their ethnic or racial background, sexual preference, or the number in their bank account,” said Deanna Darlington, Interim Executive Director of RDDC and President of Links2Equity. “The truth of the matter is that events like these are needed. We are all too familiar with the gaps that permeate underserved and historically marginalized communities. Coming together to find and create solutions to the problems that go unanswered is necessary. Working in silos or simply ignoring the challenges is no longer an option.”

“The takeaways from last year’s inaugural Health Equity Summit highlighted the work that we must do as a community to break down barriers. As we gather again, it’s up to us to use the past year as a jumping off point to continue the vital collaboration needed to ensure that people have equitable access to the resources they need,” added Craig Martin, CEO of Global Genes.

The Summit will include a series of panels and breakout sessions including:

  • The Diversity of Diversity – Exploring how disparities and distinct inclusiveness challenges can manifest differently across diverse populations in rare disease.
  • Addressing Bias and Barriers to Genetic Testing for Underrepresented Populations
  • The Importance of Rare Disease Education in Medicine
  • Medical Gaslighting – What it is and How to Address it
  • Level up your Cultural Understanding to Include More Diverse Communities
  • Journey to Leadership: Experiences of leaders from Diverse Backgrounds
  • Global Equity and Inclusion: Access to Diagnostic Tools and Expertise, Clinical Trials and Treatments
  • Underrepresentation in Rare Disease Research – Driving Promise to Practice Health Equity
  • RAREly Told Stories Film Viewing moderated by actor, Ajani Murry
  • Representation in Rare Policy

The Summit will include the following keynote speakers:

  • RDML Richardae Araojo, PharmD, MS, Associate Commissioner for Minority Health, Director, Office of Minority Health and Health Equity, U.S. Food and Drug Administration
  • Sandra Retzky, DO, JD, MPH, MBA, Director, Office of Orphan Product Development, Office of the Commissioner, U.S. Food and Drug Administration
  • Charles Hammond, MD, MPhil, FWACP, FGCP, Consultant Pediatric Neurologist, Komfo Anokye Teaching Hospital, Kumasi, Ghana, Senior Lecturer, School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana

The RARE Health Equity Summit is made possible thanks to sponsors including presenting sponsors Genentech, Horizon Therapeutics, and Travere Therapeutics; gold sponsors Biomarin, Takeda, Vertex; and bronze sponsors Amicus Therapeutics, Avidity Biosciences, Janssen, UCB.

The reception at National Center for Civil and Human Rights is made possible through support from Sangamo Therapeutics and UCB.

For more information and to register please visit: https://globalgenes.org/event/rare-health-equity-summit/

About Global Genes

Global Genes is a 501(c)(3) leading international non-profit organization that is establishing a globally connected community committed to overcoming the challenges of rare disease. Together with our partners, we help people find and build communities, gain access to information and resources, and provide hope and support for the more than 400 million people affected by rare disease around the globe. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.

About RDDC

Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition (RDDC) to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. Learn more about RDDC and BWHI.

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