The international rare disease patient advocacy organization, Global Genes, today announced the formation of a RARE Health Equity Council to aid in efforts to better understand and address diagnostic, access, and treatment gaps and challenges for underserved and underrepresented rare disease patient populations. The establishment of the Council follows the completion of several related initiatives — including a study on the diagnostic odyssey for underserved populations with rare disease, which yielded important insights in the disease areas examined, but also pointed to the lack of in-depth research and data to guide health equity efforts more broadly across rare diseases.
The Global Genes RARE Health Equity Council will provide guidance on distinct programs, beginning with the stewardship of the Health Equity RARE Patient Impact Grants, focused on supporting RARE Foundation Alliance members with their efforts to improve outreach to the Black, African American, Native American, Hispanic, LGTBQ, and other underserved and underrepresented patients about rare diseases, diagnostic testing, and the importance of participating in clinical trials as well as improve cultural competency within and across rare disease patient communities through resources and meetings. The Council also will advise on new Global Genes initiatives around patient engagement and inclusion needs in patient in research, drug development, early diagnosis, and screening. As contributors to the RARE Compassion Program, now in its sixth year of pairing diverse medical students with rare disease patients and families to build a stronger, more compassionate, equitable, inclusive, and informed healthcare system, the Council members will help ensure that a program, which has inspired more than 1,000 medical students to pursue careers in rare diseases, continues to scale to the clinical needs of underserved patients and caregivers.
“The everyday challenges of getting a diagnosis or access to care, trials, or treatment are already daunting for most rare disease caregivers and patients, but are often all the more difficult for those from communities of color and from other overlooked and underserved populations,” said Craig Martin, CEO of Global Genes. “We are honored and grateful that these talented and thoughtful members of our RARE Health Equity Council are willing to offer their time, energy, and expertise to help us to see and close these critical gaps within our community and across rare diseases.”
This year, the Council’s efforts will culminate in a Global Genes RARE Health Equity Summit in mid-November 2021, providing an opportunity to review and prioritize future health equity needs, partnerships, and programs for the rare disease community. “Now more than ever, we are focusing on the intersectionality of the challenges of rare patients and caregivers and the responsibilities of all stakeholders to address disparities in care for the rare disease community members who are not being found, heard, and cared for,” said Christian Rubio, Global Genes Vice President of Strategic Advancement. “The RARE Health Equity Council members bring extraordinary knowledge and passion for inclusive patient experiences. In their initial discussions, they are already collaborating to help identify scalable, transformative actions and initiatives to reduce inequities in rare disease.”
The RARE Health Equity Council members include:
- Tammy Boyd, Chief Policy Officer, Black Women’s Health Imperative
- Donna Cryer, Chief Executive Officer, Global Liver Institute
- Lauren Lee, Executive Vice President, Stakeholder Engagement, NephCure
- Mary McGowan, Chief Executive Officer, Foundation for Sarcoidosis Research
- Isaac Rodriguez-Chavez, Ph.D., MHSc, MSc, Senior Vice President, Scientific & Clinical Affairs, Global Center of Excellence Strategy for DCTs, PRA Health Sciences
- Rodney Samaco, Ph.D., Assistant Professor, Baylor College of Medicine; Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital
- Linda Wade, Founder & Chief Executive Officer, Sickle Cell Association of Texas
- Ahmar Zaidi, M.D., Pediatric Hematologist & Sickle Cell Advocate, Children’s Hospital of Michigan
For more information, visit www.globalgenes.org/the-rare-health-equity-leadership-council.