Twenty foundations will receive funding to improve the lives of rare disease patients through education, resources, and other support. Since its creation in 2015, the program has granted more than $700,000 to nearly 100 organizations to start projects related to rare diseases, which affect about 400 million individuals globally.
“As the RARE Patient Impact Grant program continues to expand, Global Genes is able to provide more organizations with the funding and support needed to advance the research of treatments and cures for the rare disease community,” said Kimberly Haugstad, Global Genes’ CEO, in a press release.
Grant recipients must be members of the Global Genes RARE Foundation Alliance — a coalition of more than 600 disease organizations — and be actively seeking novel, timely, and achievable ways to find disease therapies and cures. The 2020 award categories include capacity building, innovation, and support.
The Scleroderma Foundation was among 10 organizations to win for RARE capacity building. Together with Parents of Scleroderma Kids, the nonprofit organization will use the grant to provide peer-to-peer support to families and children living with the chronic disease. This includes development of webpages, creation of educational materials, and enhancement of digital and social media tools to disseminate content.
Through 20 chapters and more than 160 support groups nationwide, the Scleroderma Foundation’s overall goal is to raise funds and awareness for its mission of support, education, and research. The organization hosts an annual National Patient Education Conference, earmarks an average of $1 million annually for scientific investigations, and works with a Medical and Scientific Advisory Board of international scleroderma experts. It also offers patients and families a variety of brochures, booklets, and newsletters.
The grant program is supported through individual and community donations, as well as by Global Genes events. Working toward ultimately eliminating daily challenges faced by rare disease patients, Global Genes is committed to enhancing the program annually by increasing its financial support.
While the number of people in the world with scleroderma is unknown, the disease is estimated to affect 300,000 U.S. residents.