Worried father comforts ill son
A concerned mid adult father comforts his sleeping child.

Illumina and Genetic Alliance announced the creation of the iHope Genetic Health program Tuesday. Dubbed iHope Genetic Health, the program will seek to provide whole-genome sequencing services to tens of thousands of patients around the world with a focus on areas of need. More than one-third of Illumina’s support will be directed to patients in Africa.

Under the terms of the collaboration with Illumina, Genetic Alliance will create a network of clinics and testing labs with the necessary tools and supplies to enable genomic diagnoses for patient with rare genetic diseases. Genetic Alliance will work with additional stakeholders including drug developers, technology companies, and care providers to facilitate patient access to their data, appropriate therapeutics, and ongoing care.

“By establishing iHope Genetic Health, we are expanding our commitment to ensure that the benefits derived from whole-genome sequencing are available to as many people as possible, as quickly as possible, regardless of disease, geography or income,” said Francis deSouza, CEO of Illumina, in a press release. “By unlocking the power of the human genome, we can find answers for these patients where no others can, and dramatically change lives.”

iHope Genetic Health will further extend the reach of Illumina’s other iHope efforts by enabling clinical laboratories and care centers throughout the world to test patients impacted by rare disease and other genetic health conditions.

Genetic diseases affect more than 300 million people worldwide—the vast majority children. In high-income countries these patients often remain undiagnosed for up to seven years—dubbed the diagnostic odyssey.” But in in low- and middle-income regions, many children go undiagnosed. iHope Genetic Health will begin to address this inequity by enabling access to genetic health services which can reduce the psychological stress and loss of income that many families endure.

“Genetic Alliance’s mission has been to realize a world in which those affected by genetic disease are diagnosed and offered interventions to alleviate their suffering,” said Genetic Alliance CEO, Sharon Terry. “As the mother of two children, diagnosed with a genetic condition, I can’t rest until we build equitable systems to meet the needs of all who experience the diagnostic odyssey. In iHope Genetic Health we recognize the place of individuals, families, and communities to prioritize and solve the problems they face, consistent with their own values and culture.”

Genetic Alliance was founded in 1986, and helps deploy high-tech and high-touch programs for individuals, families, and communities to transform health systems. It comprises 10,000 organizations, 2,000 of which are disease and patient advocacy foundations, and include community health programs, employee wellness programs, local nonprofits, religious institutions, and community-specific programs to grow and expand their reach and mission.

“The success of the Human Genome Project has revolutionized medicine by enabling treatments that precisely target disease-causing changes in DNA,” said National Institutes of Health Director Francis S. Collins, M.D., Ph.D. “While the cost of genome sequencing has dropped precipitously over the past decade, it remains cost-prohibitive for many. I applaud Genetic Alliance for launching this important initiative to improve access to this life-changing technology. Access to medicine should always be a right, not a privilege.”

iHope Genetic Health is accepting applications for inclusion in the program for whole-genome sequencing and will begin reviewing applications in February 2022. For more information visit ihopegenetichealth.org.

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