Alexion Charitable Foundation Announces First Rare Belonging® Grants
17 June 2020 - 10:30PM
Business Wire
– Funding supports efforts by National
Organization for Rare Disorders (NORDⓇ) and Global Genes to address
needs of the rare disease community arising from COVID-19 pandemic
–
The Alexion Charitable Foundation, launched by Alexion
Pharmaceuticals, Inc. (NASDAQ:ALXN) in February 2020, today
announced it has awarded a total of $1.1 million in initial grants
that align with its Rare Belonging® focus. Rare Belonging seeks to
advance emotional well-being and educational opportunities, and
provide relief for critical needs, for those living with or
affected by a rare disease. Grant recipients include two leading
nonprofits dedicated to serving the rare disease community: NORD
and Global Genes.
“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,” said Alex
Schuman, Head of Corporate Social Responsibility at Alexion &
President of the Alexion Charitable Foundation. “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.”
The grant to NORD will aid the organization’s COVID-19 Critical
Relief Program, designed to support people with rare diseases and
their families who are facing financial challenges as a result of
the COVID-19 pandemic. NORD will administer and 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, RN, MSN, 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 nonmedical needs
such as rent or mortgage payments and emergency expenses.”
The Alexion Charitable Foundation’s grant to Global Genes will
support organizational members of the Global Genes RARE Foundation
Alliance, as well as patients, caregivers and siblings impacted by
rare diseases for which a patient organization may not yet exist.
Global Genes will administer grants to organizations and
individuals to support needs arising directly from the COVID-19
pandemic.
“The pandemic has exacerbated longstanding challenges faced by
the rare disease community,” said Kimberly Haugstad, Chief
Executive Officer for Global Genes. “We’ve seen funds traditionally
earmarked to support people with rare diseases diverted to address
COVID-19 generally. 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.”
The grants to NORD and Global Genes align with the Rare
Belonging funding priorities, which include:
- Mental health counseling: Connecting the rare disease
community with mental health professionals, supporting mental
health tracks at conferences and related assistance.
- Education and job skills: Supporting funding for
educational needs for children and young adults, and career
reskilling for adults newly diagnosed with a rare disease.
- Transportation and accommodations: Providing funding for
pressing needs.
- Critical needs: Providing financial assistance in times
of critical need, such as natural disasters or significant,
unplanned expenses.
In addition to the grants announced today, the Alexion
Charitable Foundation initially responded to the COVID-19 pandemic
in early April by providing support for community responses to
address this public health crisis.
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 501(c)(3)
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 the Alexion Charitable
Foundation.
About Alexion
Alexion is a global biopharmaceutical company focused on serving
patients and families affected by rare and devastating 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.
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