Global Genes’ Inaugural RARE Health Equity Summit Identifies Gaps in Healthcare Faced by Minoritized Communities With Rare Diseases

Gathering of Community Leaders, Advocates, Clinicians, Researchers and Industry Explored Solutions to Help “Level the Playing Field” in Health of Those with Rare Diseases

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, held an inaugural RARE Health Equity Summit on November 18-19, 2021 in Philadelphia, connecting stakeholders from across the rare disease community to align on how to better address health inequities of the rare disease community.

The Summit is the start of a three-pronged, multi-year partnership forged in 2021 between Global Genes and the Rare Disease Diversity Coalition, with the goal of gaining a better understanding of persistent gaps in diagnosis and access to research and care for minoritized and underrepresented patient communities. The output of the Summit will be a RARE Health Equity report and call to action, to be issued early in 2022.

The two-day Summit included panel discussions and keynote addresses from leaders across the health and rare disease space, as well as four workshop breakout sessions covering the topics of improving rare health literacy, challenges of rare adult and older patients, challenges of rare young adult patients and addressing rare racial and ethnic disparities.

“Equity is about meeting people where they are and not assuming they all are starting at the same place,” said Shonta Chambers, MSW, Executive Vice President Health Equity Initiatives and Community Engagement, Patient Advocate Foundation, during a panel session on expanding access to underserved patient communities. Others echoed the sentiment on the importance of establishing and understanding a baseline that is truly representative of the community. “Equity is the assurance of the highest level of health for all people,” noted Monica Webb Hooper, Ph.D., Deputy Director, National Institute on Minority Health and Health Disparities.

Three keynotes at the summit confronted some of the most prevalent and relevant issues in equity faced by the community:

• The Importance of Cultural Considerations in Rare Healthcare: Speaking on the Latinx/Hispanic and transgender communities, in this keynote address, Dr. Ricardo Correa, M.D., Program Director, Endocrinology, Diabetes and Metabolism Fellowship, University of Arizona College of Medicine, Phoenix, noted the importance of remaining culturally humble and open-minded when working with people in the rare disease community
• Moving Toward the 4^th Generation of Research to Address Health Disparities in Rare Diseases and Beyond: In this keynote discussion, Monica Webb Hooper, Ph.D., Deputy Director, National Institute on Minority Health and Health Disparities, addressed the longstanding disparities in access to high quality healthcare and how the field is encouraged to push full speed ahead into third and fourth generation health disparities research with the goal of assuring health equity
• Lessons from a Pandemic: What COVID-19 Taught Us About Health Equity: Bert Bruce, MBA, Regional President, North America, Rare Disease at Pfizer discussed how the pandemic challenged the scientific and public health communities to address health disparities and what lessons can be applied to accelerate innovations for patients living with rare diseases

In addition, a series of panels comprised of leaders and allies in the community spoke to a number of other important topics, including:

• Engendering trust and empowering individual patient experiences while addressing bias and improving diagnostic algorithms to account for a diverse patient population
• Exploring how digital health technologies, repurposing, decentralized clinical trials and community outreach can lead to better equity, diversity, and inclusion in rare research
• Addressing the root cause of various barriers within our health system and what challenges still exist
• Acknowledging historic healthcare injustices, disparities in rare disease research, diagnosis and treatment, and how we have a responsibility to level the playing field
• What organizations within the current healthcare system can do to address inequities in access and educate the medically underserved population about the importance of preventative care
• Exploring research as a driver for access and why low/middle income countries should care about rare disease

Global Genes is grateful for the support of the event’s sponsors: Genentech, Pfizer, Travere Therapeutics (Champion Sponsors); BioMarin (Presenting Sponsor); Editas, Harmony Biosciences, Horizon, Illumina, Ionis, Sanofi Genzyme, Taysha, UltraGenyx, Vertex (Partner Sponsors); Amicus Therapeutics, Catalyst Pharmaceuticals, Fenrici, Intercept, Ipsen, Ovid Therapeutics, PTC Therapeutics, Spark Therapeutics, Zogenix (General Sponsors); and Mallinckrodt Pharmaceuticals (Supporting Sponsor).

For more information on this event and next year’s Second Annual RARE Health Equity Summit, please visit www.globalgenes.org.

About Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. 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.