Global Genes Awards 2022 Financial Advocacy in Rare (FAIR) Patient Impact Grants to Fund Impactful Programs in Rare Disease Communities

Nine Leading Organizations Receive Funding To Further Educate The Community On Financial Challenges Associated With Rare Disease

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, today announced the recipients of their annual Financial Advocacy in RARE Patient Impact (FAIR) Grant. The FAIR Grant helps to fund the research and creation of educational resources and programs that help the community better understand and navigate the financial challenges associated with rare or undiagnosed conditions.

“Even those of us with relatively uncomplicated healthcare needs can struggle to navigate through access to health coverage and related finances,” said Craig Martin, CEO of Global Genes. “Families with rare disease often face significantly higher hurdles both from an overall financial perspective and in accessing specialized medical services and treatments. Through our RARE Patient Impact Grants program, we are pleased to support patient advocacy organizations that are helping their communities better tackle issues that impact financial well-being and access to needed care.”

The winners of the 2022 Financial Advocacy in RARE (FAIR) Patient Impact Grant and their initiatives:

• Prader-Willi Syndrome Association – USA (PWS) will create a free downloadable kit of materials called “Rare(ly) Missed Opportunities: Your PWS Financial Guide,” to provide resources addressing both the direct and indirect financial issues that PWS caregivers may face.
• Team Telomere Inc. will consist of a three-phase project that includes financial literacy and well-being resources, a ‘one-pager’ of resources for quick reference, and a webinar on healthcare financial literacy.
• Alaafia Women's Corporation will provide those living with Sickle Cell with training and resources for digital careers that will lead to financial independence, and assist individuals living with Sickle Cell in maintaining employment with digital careers and skills.
• Dreamsickle Kids Foundation will create a digital book for the 1000 patients with SCD in Nevada and their caregivers providing resources with emphasis on the coverage benefits that could be of direct benefit to patients with SCD.
• IndoUSrare will aim to determine the availability and accessibility of various schemes for financial assistance for rare diseases in India, create educational resources based on the findings, and create awareness on available financial schemes among the rare disease community in India.
• All India Institute of Medical Sciences will use the grant to create 20 hours of webinar content by experts, health care professionals, and policy makers, with a focus on financial solutions.
• Foundation for Sarcoidosis Research (FSR) will use the grant to gain deeper insight about the financial challenges experienced by the community by means of a survey, and in turn educate and address those challenges through a live summit and new webpage.
• FD/MAS Alliance (previously known as Fibrous Dysplasia Foundation) will create a new website, conduct two to three webinars, host at least one roundtable forum, and a video that synthesizes the forum and webinars.
• The Global Foundation for Peroxisomal Disorders (GFPD) will formally identify and assess the unique financial challenges faced by those living with peroxisomal disorders through targeted survey questions that will be piloted at the GFPD Family and Scientific Conference in mid-June.

The grant is made possible through sponsorship from Horizon Therapeutics and Pfizer. For more information on this program, visit https://globalgenes.org/financial-advocacy-impact-grant/

About Global Genes

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. 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.