Global Genes and the Rare Disease Diversity Coalition Expand Effort to Accelerate Diagnosis of Rare Disease in Underserved Communities
October 19, 2023
ALISO VIEJO, Calif.–OCTOBER 19, 2023–Global Genes, a leading rare disease patient advocacy organization, and the Rare Disease Diversity Coalition (RDDC) today launches the second phase of their Know Your Family History initiative, which promotes more accurate, timely, and inclusive diagnoses within underserved communities.
Know Your Family History is part of a multifaceted partnership between Global Genes and the RDDC. RDDC was launched by Black Women’s Health Imperative to address the challenges faced by underserved populations with rare diseases and to reduce health disparities.
The new phase of the initiative focuses on the creation of educational materials aimed at community health workers engaged with Black, Latinx, and other minoritized communities within Kansas City, KS and Birmingham, AL metro areas. These materials will be utilized in teaching community health workers about rare diseases broadly, the importance of family histories, the role of genetic counseling, and when and how people can seek out genetic testing.
“People living with rare genetic diseases can go for years without obtaining an accurate diagnosis for their conditions and this delay can be much longer for people from historically underserved communities,” said Shruti Mitkus, Director of Genetic Education and Navigation for Global Genes, and Chair of an RDDC working group, Delays in Diagnosis. “By working with community health workers who are embedded in the communities they serve, this initiative will go a long way in increasing awareness of rare diseases at the grassroots level and help accelerate the path to a diagnosis and treatment.”
The first phase of the initiative, which began in 2022, involved a social media-driven, online campaign. Global Genes and RDDC created culturally-appropriate educational content that addressed the importance of family history, information about newborn screening, when to consider genetic testing, and how a genetic counselor may be able to help. Members of the RDDC Delays in Diagnosis working group, which included patients, caregivers, and health and diversity advocates who have extensive experience working with underserved communities, reviewed the campaign materials and provided input.
“In the case of many rare diseases, early treatment can be essential to minimizing the damage disease causes and improving the quality of life for people with these conditions. Knowing your family’s health history can help people recognize signs of a possible genetic disease and the need to pursue testing for themselves or a family member so they can start treatment before a condition progresses,” said Jenifer Ngo Waldrop, executive director of the RDDC. “Sometimes this can be a tough conversation, but it can give people important knowledge that can save lives, make our healthcare system less unfair, and stop needless suffering by letting them know when to get genetic testing.”
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 composed 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.
To learn more, visit: https://www.rarediseasediversity.org/