Now in its fifth year, the 2020 grant program is awarding funds totaling almost $200,000 to these organizations.
The program provides funding for rare disease patient groups that belong to the Global Genes RARE Foundation Alliance, a coalition of more than 600 rare disease organizations that believe that “in the power of collective impact and understand that together, we are more powerful,” according to a statement on its website.
“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,” Kimberly Haugstad, CEO of Global Genes, said in a press release.
“Since its inception in 2015, the program has provided more than $700,000 in grants to support nearly 100 organizations that may not otherwise receive financial assistance to launch projects related to rare disease,” Haugstad added.
The 2020 program offers three categories of funding — RARE Innovation, RARE Support, and RARE Capacity Building. The Cold Agglutinin Disease Foundation was awarded funding under capacity building.
The grants allow organizations to make an even more significant impact in the lives of patients with rare diseases and caregivers by providing education, innovative resources, and additional support. The program is funded by community donations, individual donors and with money raised at Global Genes’ events. The organization hopes to continue to build the program by increasing the amount of available funding each year.
Founded in 2007 by three cold agglutinin disease patients, the Cold Agglutinin Disease Foundation aims to provide information, support, and encouragement to other patients, including offering suggestions on handling everyday situations, relating patient stories, sharing detailed information on the disease, and providing updates on therapy development.
Other patient groups included in the RARE Capacity Building category are the Champ1 Research Foundation, Scleroderma Foundation, Mission:Cure, Mast Cell Hope, Our Odyssey, Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, SATB2 Gene Foundation, Stone Soup Group and T.E.A.M. 4 Travis (Together Ending Asplenia Mortality).
A complete list of the foundations awarded grants is available here.