Our Mission
iHope provides clinical genomic testing and follow-up services to children with suspected rare genetic disease — regardless of social status, income, or geographic location.
A Program of Genetic Alliance
iHope™ is a program of Genetic Alliance dedicated to ensuring that every child with a suspected rare genetic disease has access to clinical genomic testing and follow-up services. We work across borders and income levels to bring life-changing diagnostic technology to families who need it most.
Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation
200M+
Today, rare disease and other genetic conditions affect at least 200 million individuals worldwide, the vast majority of whom are children.
In high income countries these patients often remain undiagnosed for an average of seven years, but in low and middle income geographies many families will never know the cause of their child's suffering.
The Diagnostic Challenge
As a result of limited access to genomic testing, many families end up receiving inappropriate testing and ineffective therapies. The gap between what is medically possible and what is available to patients in underserved regions continues to grow.
If your family member has an undiagnosed genetic condition, and you would like more information, please contact iHope.
Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation
We have waited for this moment for more than 30 years. As the mother of two children with a rare genetic disease, I want every child to get the answers they deserve so that their families, doctors and communities can care for them in the best way possible. We will empower these patients with the information they desperately need.
— Sharon Terry, CEO, Genetic Alliance
Clinical Genomic Sequencing
Despite evidence that clinical genomic sequencing should be a first-line test, and that children with a diagnosis are up to two-fold more likely to get precision management, there is still limited availability to this life-changing technology outside of the US and Europe.
iHope is working to change that — bringing advanced genomic testing to underserved communities worldwide.
Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation
Get Involved
Whether you're a family seeking answers, a clinician looking to partner, or a supporter wanting to make a difference — we'd love to hear from you.