ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, today released its 2022 Rare Disease Equity, Diversity, and Inclusion Report: Turning Words Into Action, sharing insights and challenges from stakeholders across the rare disease community, and highlighting issues that need to be addressed for underrepresented people in the rare disease space.
The report includes insights brought to light during the inaugural RARE Health Equity Summit cohosted by Global Genes and the Rare Disease Diversity Coalition (RDDC) in November 2021. The summit kicked-off a multi-year partnership between Global Genes and RDDC in an effort to better understand persistent gaps in diagnosis, and access to research and care for minoritized and underrepresented patient communities.
“We know that people with rare diseases are already inherently underserved,” says Craig Martin, CEO of Global Genes. “They struggle with diagnostic odysseys lasting 5-7 years on average. Once diagnosed, they face the reality that 95 percent of rare diseases don’t have an approved treatment. For communities of color and other minoritized populations, the challenges are often even greater, given disparities in access to the latest diagnostic tools, clinical trials, medical specialists and other supportive services and resources across these communities.”
The report, featuring insights from leading researchers and partners from across the rare disease spectrum, examines the progress gained over the last year in helping patients find faster paths to diagnoses. Highlights of the report include:
- Navigating the rare disease space during a pandemic and addressing health equity disparities exacerbated by COVID-19
- Developing educational materials that are accessible and digestible for rare disease patient communities
- Continuous education opportunities for medical professionals on how to best engage with rare disease patients
- The importance of building trust between healthcare professionals and patient communities to improve communication, address the lack of resources, and increase diversity in clinical trials
- Information about the most prevalent challenges facing the rare disease community today
- Encouragement for stakeholders – from rare disease organizations to healthcare systems – to work together to achieve health equity and overcome disparities at each stage of the patient journey
In addition to insights from the RARE Health Equity Summit sessions and workshops, the health equity report includes information gleaned from other programs and partnerships, including:
- Health Equity RARE Patient Impact Grants, awarded to 10 rare disease patient organizations to expand their research, resource development, outreach, education, and awareness efforts supporting cultural competency
- Financial Advocacy RARE Patient Impact Grants, provided to rare disease patient organizations to promote financial advocacy among rare disease organizations and the people they serve
- The RARE Compassion Program, an initiative that connects medical students with individuals and families with rare diseases to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research, and ultimately, through patient-centric listening and interactions, build the next generation of future medical professionals as key advocates for their patients.
Download the complete 2022 EDI Report to learn more about Global Genes’ partnerships and initiatives and how to get involved in forwarding the research and development for faster diagnoses and better treatments in the rare disease community.
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.
