Alexion Charitable Foundation Supports iHope Genetic Health Through Its Rare Belonging® Signature Initiative
Join iHope Genetic Health
Advancing equity in rare disease diagnosis through a global partnership for free genomic testing
Alexion Charitable Foundation’s Rare Belonging® initiative invests in partnerships that support individuals, caregivers, and families impacted by rare disease. Through this grant, ACF furthers its commitment to community-powered, patient-centered solutions, especially for individuals living with rare diseases in low-resource settings. “We are excited to partner with the Alexion Charitable Foundation,” said Sharon Terry, President and CEO of Genetic Alliance. “This grant will enable us to reach more families in need, offer earlier diagnoses, and open pathways to care for children who would otherwise go without answers.”
The iHope Genetic Health (iHope) program is a global network of clinical labs and frontline care sites dedicated to providing equitable access to clinical genomic testing. It accomplishes this by partnering with Illumina and other technology and biopharma companies to donate support. iHope lowers diagnosis costs to zero for families and gives them control over their health data. So far, the program has launched in ten countries, with 600 children receiving clinical sequencing in 2024 alone.
“Our work with Alexion Charitable Foundation reflects a shared belief that where a child is born should not determine whether they receive a diagnosis,” said Ryan J. Taft, PhD, Chief Scientific Officer at Genetic Alliance. “Together, we are bringing genomic medicine to the children who need it most. We are estimating we will reach 1,000 children this year. We have recently released a Request for Applications to increase the number of clinical sites in iHope.”
The grant from ACF will fund sequencing and follow-up services for children from low- and middle-income countries (LMICs) and low-to-moderate income households in high-income nations. Clinical sites in Ghana, Peru, Mexico, Brazil, Zimbabwe, Botswana and beyond will benefit from this support, strengthening local capacity and reducing the diagnostic odyssey faced by so many families.
By investing in iHope Genetic Health, the Alexion Charitable Foundation joins a growing network of partners committed to providing equitable access to precision medicine and empowering patients and families worldwide.
About iHope Genetic Health
iHope Genetic Health is a program of Genetic Alliance, offering clinical whole genome sequencing to children with suspected genetic diseases in under-resourced communities. Supported by in-kind contributions from Illumina, AWS, and others, iGH provides a global, patient-centered platform for diagnosis, care, and research.
About Genetic Alliance
Genetic Alliance is a nonprofit health advocacy organization transforming health through genetics. Founded in 1986, Genetic Alliance fosters innovation, supports patient empowerment, and promotes equitable access to genetic services and research.
About Alexion Charitable Foundation
The Alexion Charitable Foundation (ACF)’s mission is to address health disparities within and among the rare disease community. ACF invests in projects to ensure that all underserved communities have equitable pathways to the care, services, and resources they need to live healthier lives.
Sharon Terry
Genetic Alliance
+1 202-966-5557
sterry@geneticalliance.org
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