As you know, COVID-19 has fundamentally changed our daily life. What began as a novel coronavirus in Wuhan, China has developed into a global pandemic: 9 million diagnosed cases worldwide, with 469,000 deaths. As a result, many medical resources and funding have been diverted to help patients with COVID-19. However, this leaves those with other medical needs, such as people in the rare disease community, without much help. But the Alexion Charitable Foundation, developed by Alexion Pharmaceuticals, recently granted $1.1 million to programs and organizations that support this community.
Alexion Charitable Foundation: Rare Belonging Grants
The Rare Belonging grants aim to improve the lives of patients with rare diseases. The grants are designed:
to help the rare disease community cope with isolation, attain education and job skills support, and [alleviate] economic burden.
As a result, funding priorities include:
- Assisting patients with rare diseases (and their families) with finding mental health support and counseling
- Providing funding for urgent transportation or accommodation needs
- Training and strengthening career-related skills
- Offering homeschooling or educational resources
The first two grant recipients are Global Genes and the National Organization for Rare Disorders (NORD).
For the former, the grant will support the RARE Foundation Alliance. The Alliance is a coalition of over 600 rare disease and patient advocacy organizations. Through this collaboration, the Alliance offers networking, educational resources, events, drug development symposiums, and more. Additionally, funding will also assist patients whose condition doesn’t yet have an associated advocacy organization.
For the latter, funding will support the COVID-19 Critical Relief Program. Overall, this grant will assist over 500 patients with non-medical needs such as:
- Phone or internet costs
- Unexpected utility expenses
- Rent or mortgage payments
- Adaptive or distance learning tools
- Travel or accommodation
- Emergency car, furnace, home, or appliance repair
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