Ahead of Rare Disease Day, new support becomes available to the rare community
Submitted by Alexion Pharmaceuticals
Alexion Pharmaceuticals, Inc. (NASDAQ:ALXN) today announced the launch of the Alexion Charitable Foundation to provide further support for the rare disease community and for local communities which the company serves. The key components of the Foundation are the Rare Belonging™ and Local Needs Grants focus areas. Rare Belonging seeks to advance emotional well-being and educational opportunities, and provide relief for critical needs, especially for those living with or affected by a rare disease. The Foundation seeks eligible, disease-agnostic nonprofit organizations to help create and execute programs aligned with these priorities.
“Alexion understands that the impact of living with a rare disease goes far beyond the disease itself. It affects families, caregivers and has broad reaching implications in terms of mental health, education, and even job security,” said
Rana Strellis, Senior Vice President, Global Culture and Corporate Social Responsibility at Alexion. “Through Rare Belonging, we hope to work with eligible, disease-agnostic nonprofits to help alleviate some of these challenges.”
Rare Belonging, to be funded through grants made by the Foundation to other, disease-agnostic nonprofit organizations, is designed to benefit people affected by any of the 6,000 diseases identified in the Global Genes' RARE list,1 including patients, their families and caregivers by providing funding for:
Mental health counseling: Connecting the rare disease community with mental health professionals, supporting mental health tracks at rare disease conferences and providing related assistance.
Education and job skills: Providing funding for educational needs for children and young adults and career reskilling for adults newly diagnosed with a rare disease.
Transportation and accommodations: Reducing the financial burden of traveling to important social, educational and advocacy opportunities, as well as to doctor appointments, hospitals, infusion centers, clinical trials and medical centers of excellence.
Critical needs: Providing financial assistance in times of critical need, such as natural disasters or significant, unplanned expenses.
The Foundation, through its Local Needs Grants, will also contribute a portion of its funding to organizations in the communities where Alexion has a major presence and that align with the mission of the Foundation. Local Needs Grants are focused on helping organizations that serve disadvantaged or disenfranchised people, with a focus on advancing emotional well-being, educational opportunities and the cause of diversity in society and critical institutions.
To learn more about eligibility requirements and/or to apply for a grant from the Alexion Charitable Foundation, visit https://alexion.com/our-commitment/alexion-charitable-foundation.
About the Alexion Charitable Foundation
The Alexion Charitable Foundation, a nonprofit* foundation, is organized and operated exclusively for charitable and educational purposes. Its mission is to offer promise and cultivate a sense of belonging — particularly for people affected by a rare disease — through initiatives that advance emotional well-being, educational opportunities and economic relief. The Alexion Charitable Foundation is separate from Alexion Pharmaceuticals, Inc. and its corporate giving, patient support programs and direct engagement with various patient organizations. The Alexion Charitable Foundation makes grants on a disease-agnostic basis and does not provide funding for the costs of clinical care to treat rare diseases, such as the cost of prescription medicines. To learn more, visit https://alexion.com/our-commitment/alexion-charitable-foundation.
*The Alexion Charitable Foundation has applied for and is currently awaiting confirmation of its 501(c)(3) status.
Alexion is a global biopharmaceutical company focused on serving patients and families affected by rare diseases through the discovery, development and commercialization of life-changing medicines. As the global leader in complement biology and inhibition for more than 20 years, Alexion has developed and commercializes two approved complement inhibitors to treat patients with paroxysmal nocturnal hemoglobinuria (PNH) and atypical hemolytic uremic syndrome (aHUS), as well as the first and only approved complement inhibitor to treat anti-acetylcholine receptor (AchR) antibody-positive generalized myasthenia gravis (gMG) and neuromyelitis optica spectrum disorder (NMOSD). Alexion also has two highly innovative enzyme replacement therapies for patients with life-threatening and ultra-rare metabolic disorders, hypophosphatasia (HPP) and lysosomal acid lipase deficiency (LAL-D). In addition, the company is developing several mid-to-late-stage therapies, including a copper-binding agent for Wilson disease, an anti-neonatal Fc receptor (FcRn) antibody for rare Immunoglobulin G (IgG)-mediated diseases and an oral Factor D inhibitor as well as several early-stage therapies, including one for light chain (AL) amyloidosis, a second oral Factor D inhibitor and a third complement inhibitor. Alexion focuses its research efforts on novel molecules and targets in the complement cascade and its development efforts on the core therapeutic areas of hematology, nephrology, neurology, metabolic disorders and cardiology. Headquartered in Boston, Massachusetts, Alexion has offices around the globe and serves patients in more than 50 countries. This press release and further information about Alexion can be found at: www.alexion.com.
1 | https://globalgenes.org/rare-list/
Megan Goulart, 857-338-8634
Senior Director, Corporate Communications
Original Press Release: https://www.businesswire.com/news/home/20200227005210/en/
Download the attached file(s):ACF_FactSheet_FINAL.pdf
Alexion is a global biopharmaceutical company focused on serving patients and families affected by rare diseases through the discovery, development and commercialization of life-changing therapies. As the global leader in complement biology and inhibition for more than 20 years
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