Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
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The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced.

The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the daily lives of those with rare diseases. These priorities include mental health counseling, education and job skills, transportation and accommodation, as well as other critical needs.

Global Genes and the National Organization for Rare Disorders (NORD), two organizations dedicated to providing assistance to the rare disease community, have been named the first two grant recipients.

“People living with rare diseases face many challenges on a daily basis. The global COVID-19 pandemic has created additional obstacles in managing their health and well-being,” Alex Schuman, head of corporate social responsibility at Alexion Pharmaceuticals and president of the Alexion Charitable Foundation, said in a press release.

“The Alexion Charitable Foundation is pleased to support the work of two disease-agnostic organizations with programs specifically focused on helping with the nonmedical challenges faced by the rare disease community in this time of great need,” Schuman added.

NORD will use the grant to support its COVID-19 Critical Relief Program. This initiative provides eligible individuals with financial assistance for essential nonmedical expenses such as emergency repairs, rent or mortgage, and unexpected utility expenses, among others. NORD will award grants directly to qualifying individuals who apply for financial assistance.

“NORD is delighted to be among the first recipients of the Alexion Charitable Foundation’s Rare Belonging grants,” said Jill Pollander, director of patient services for NORD. “The global coronavirus pandemic has significantly impacted the rare disease community in many ways, including economically. The support from the Alexion Charitable Foundation is expected to help more than 500 individuals with financial assistance for non-medical needs.”

Global Genes will use the grant money to support its RARE Foundation Alliance, a coalition of more than 600 rare disease organizations working to provide effective strategies, tools, and resources to produce better outcomes for the rare disease community. Funds will also directly support patients, caregivers, and siblings affected by rare diseases for which a patient organization may not yet exist.

“The pandemic has exacerbated longstanding challenges faced by the rare disease community. We’ve seen funds traditionally earmarked to support people with rare diseases diverted to address COVID-19 generally,” said Kimberly Haugstad, CEO of Global Genes.

“The Rare Belonging grant will help fill these gaps and provide critical services like telehealth psychosocial counseling, special education and distance learning, home schooling tools and resources, and career counseling to more than 1,300 people,” she added.
Launched by Alexion earlier this year, the Alexion Charitable Foundation, previously donated $500,000 to nonprofit organizations supporting healthcare workers and logistical efforts to respond to the COVID-19 outbreak.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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