Sharon F. Terry
CEO, Genetic Alliance
There are 350 million undiagnosed children worldwide, with most lacking access to genomic testing for proper diagnosis and care options.
In a world where medical advancements often seem reserved for the fortunate few, iHope Genetic Health (iGH) is striving to change the narrative for children living with rare diseases.
Call for equitable genetic testing in children
The World Health Organization has called for genetic testing to be as accessible in low to middle-income countries as it is in high-income countries. With an estimated 350 children worldwide still undiagnosed, the urgency for equitable access to state-of-the-art genomic-based sequencing has never been more critical.
Many affected children reside in low to middle-income countries or under-resourced areas and face a bleak future without proper diagnosis and treatment. iGH, a groundbreaking programme of Genetic Alliance, provides hope for the future. Genetic Alliance, established in 1986, has been a strong advocate for giving individuals, families and communities a voice in genetics and their health.
iGH advances this mission by offering free genome and exome sequencing to children from under-resourced communities who are suspected to have genetic diseases. This initiative aims to provide accurate diagnoses to enable appropriate follow-up care, including medicines, clinical trials and support where possible.
The urgency for equitable access to
state-of-the-art genomic-based
sequencing has never been more critical.
Collaborative genetic diagnostics initiative
The significance of this initiative cannot be overstated. iGH partners with Illumina, which generously donates the necessary materials for sequencing. iGH collaborates with prestigious laboratories that conduct the sequencing and interpretation pro bono, ensuring that financial barriers do not impede the path to a diagnosis.
The importance of this initiative is deeply meaningful to me on a personal level. Going through the process of finding a diagnosis for my own children 30 years ago was a time filled with fear and uncertainty. For parents, the distress of witnessing their children endure unexplained symptoms is indescribable. Genetic Alliance’s dedication to reducing this suffering through advanced genomic technologies is not just a professional commitment but a personal mission for many involved.
