The Alexion Charitable Foundation has awarded a total of $1.1 million in new grant funds to various nonprofits to assist individuals and families dealing with rare disease diagnosis. The two recipients of this grant funding are nationwide nonprofits who directly serve the rare disease community: The National Organization For Rare Disorders (NORD), and Global Genes.
NORD Critical Relief Program To Help Patients Affected By The Pandemic:
Here’s how the nonprofits will allocate the grant funding:
National Organization For Rare Disorders: This organization will use the grant funds awarded to fund their COVID-19 Critical Relief Program, which is meant to help families of a rare disease patient who are struggling financially as a result of the COVID-19 pandemic. NORD will determine as to who needs the funds and directly award it to those families.
Jill Pollander, RN, MSN, Director of Patient Services for NORD spoke about NORD being awarded this grant to help people impacted by the pandemic:
“NORD is delighted to be among the first recipients of the Alexion Charitable Foundation’s Rare Belonging grants”.
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 such as rent or mortgage payments and emergency expenses.”
Global Genes Works To Help Patients With Rare Disorders
The grant to Global Genes will go to support their Global Genes RARE Foundation Alliance as well as patients, caregivers, families, impacted by a rare disease that do not currently have a patient organization. Global Genes will distribute grant funds to families or individuals financially affected by COVID-19.
Kimberly Haugstad, Chief Executive Officer for Global Genes also spoke on GG being awarded grant funding to help people impacted by COVID-19:
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. The Rare Belonging grant will help fill these gaps and provide critical services like telehealth psychosocial counseling, special education and distance learning, homeschooling tools and resources, and career counseling to more than 1,300 people.
Continuing The Fight Against Rare Diseases
More on rare disease patients directly from The Alexion Charitable Foundation:
“Every day, people living with rare diseases, their caregivers, and families face fears of the unknown with courage, tenacity, and grace that inspire us to continue to strive to do everything we can to transform their lives”.
Alex Schuman, Head of Corporate Social Responsibility at Alexion & President of the Alexion Charitable Foundation had this to say about the foundation awarding these grants:
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 Schuman, “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.”
Medical grants including grants for rare diseases is listed in the Health and medical category on GrantWatch.com