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

Key Facts

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.
- 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.
- 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.