Global Genes Awards 2022 Health Equity Grants to Rare Disease Groups Addressing Challenges Affecting Underserved Communities

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, today announced the recipients of its annual Health Equity RARE Patient Impact Grant. Focused on education, outreach, and research, the grant provides patient advocacy organizations from around the world the ability to develop and deploy resources, information, data, and processes to better engage, understand and address the needs of their underserved communities. This can lead to improved research, diagnosis and standards of care, and a more comprehensive and inclusive understanding of their disease and patient journey.

“For individuals and families facing a rare disease, the journey is already incredibly difficult,” said Craig Martin, CEO of Global Genes. “For those in historically underserved or marginalized communities, the struggle is often even more challenging. Through our Impact grants, we are pleased to support leaders on a global scale with resources to more effectively collect, create and share information and to help lessen burdens and improve experiences and outcomes for underrepresented members of the rare disease community.”

The winners of the 2022 Health Equity RARE Patient Impact Grant, and their initiatives:

• Myhre Syndrome Foundation - The 4You project will bring together four speaking languages – Spanish, German, French and Italian, translating their website and key informational documents to bring greater inclusion and understanding, to not only the patient population but their associated care teams and providers.
• International Prader-Willi Syndrome Association – USA - Their goal is to subtitle educational films and translate consensus documents into Standard Arabic for Arabic-speaking patients, caregivers, and healthcare professionals who may currently or in the future support people with PWS and their families.
• Raymond A. Wood Foundation - The Spanish Language Education and Outreach Program will provide access to educational resources for the Spanish language population that is affected by craniopharyngiomas.
• Team Telomere Inc. - Their project will span several dimensions: developing and translating critical material into Spanish, creating more accessible resources through effective distribution, and forming systems for sustainable community reach.
• Cystic Fibrosis Research Institute (CFRI) - The Faces of CF Diversity and Inclusion outreach project will advance CFRI’s goals to expand awareness of cystic fibrosis and its symptoms among communities of color, while raising awareness of diversity among the CF community and medical care providers.
• COMBINEDBrain Inc - ClinGen medical surveys are internationally acceptable by the medical and research community, and collected on other large platforms, such as RareX. COMBINEDBrain plans to translate the ClinGen Surveys into European French, Italian, and German, which will make it possible to reach an additional 220 million people. They also plan to share these translations with all other researchers and foundations directly.
• PFIC Network, Inc. will organize and host a series of virtual one-on-one meetings and workshops for patients in India and Pakistan, utilizing interpretation services to break linguistic barriers and increase patient representation in their global patient advocacy program.
• SCN2A Asia Pacific will translate their “What is SCN2A” and “Clinical trials - all you need to know” brochures into Chinese, Japanese, Korean and Hindi, as well as develop a clinical trials microsite translated into the four key languages of their region.
• XLH Network will create a "snapshot" of targeted geographical areas that will demonstrate the demographics and include data obtained from discussions with families, clinicians, and other health care providers in that area. This snapshot will show how they can best utilize further outreach efforts to increase the likelihood that families who are undiagnosed but living with XLH will have the ability to access appropriate diagnosis and treatment.

The grant is made possible through sponsorship from Horizon Therapeutics and Travere Therapeutics. For more information on this program, visit https://globalgenes.org/health-equity-rare-patient-impact-grant

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.