ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, and the Rare Disease Diversity Coalition (RDDC) today launched the next phase of a multifaceted partnership to accelerate and advance health equity for the rare disease community. Today's launch of the Know Your Family History initiative is supported by an integrated and multi-channel awareness campaign focused on the importance of knowing and discussing family health history. Understanding this history can lead to more accurate, timely and inclusive diagnoses. It affords more equitable access to trials, treatments and care for underserved populations within the rare disease community.
Cultural and other barriers can often prevent or limit identification, documentation and sharing of important family medical history that might otherwise lead to an earlier and more accurate diagnosis, access to a clinical trial and/or specialized care and treatment. The average time to diagnose a rare disease is estimated to be five to seven years across all populations. While people of color and those from other underserved communities often face additional challenges that further delay or deny them access to a diagnosis, leading to inequitable outcomes.
“Healthcare has historically underserved and underprovided for marginalized and minoritized communities,” said Deanna Darlington, Interim Executive Director of RDDC and President of Links2Equity. “This initiative offers solutions that can fill gaps in the personal medical histories of those living with or affected by rare diseases. Our initiative expedites the diagnostic odyssey, educates and arms the individual with information needed moving forward in their care and treatment.”
The Know Your Family History initiative seeks to combat barriers by providing a single, aggregated resource, in both English and Spanish, that facilitates and provides guides for conversations with family members. Topics covered include genetic testing/counseling, videos and testimonials from patients and caregivers who have benefited from genetic testing and counseling, access to Global Genes’ RARE Concierge Patient Services to get personalized answers to individual questions and messages from experts including:
- Garfield Clunie, MD – President, National Medical Association Region 1, Director, Maternal-Fetal Medicine, Obstetrics & Gynecology, The Brooklyn Hospital Center
- Riccardo Correa, MD – Associate Professor of Medicine, University of Arizona
- Barbara Harrison – Certified Genetic Counselor, Howard University College of Medicine
- Sarita Edwards – Rare Parent & Patient Advocate, CEO & President, The E.WE Foundation
- Maria DeCavi - Rare Parent, Director of Family Support & Social Services, The Akari Foundation
“Those diagnosed with a rare disease often face an uphill battle as it is,” said Craig Martin, CEO, Global Genes. “Factor in the historic inequities and extra hurdles faced by marginalized communities and it becomes near impossible. It’s our goal to provide as many resources as possible to ensure productive conversations with loved ones and caregivers.”
To learn more, visit www.knowyourfamilyhistory.org or www.conozcasuhistoriafamiliar.org.
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 Rare Disease Diversity Coalition
Black Women’s Health Imperative launched the Rare Disease Diversity Coalition 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. The Rare Disease Diversity Coalition is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders. Our leaders focus on reducing racial disparities in the rare disease community, identifying and advocating for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color, and helping achieve greater equality within the rare disease community.
