iHope

iHope™ is a Genetic Alliance program that will eliminate barriers to genomic testing by offering access to clinical genome sequencing (cGS) and other genomic diagnostic tests to patients with suspected pediatric-onset rare genetic disease regardless of their social status, income, or geographic location.

Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation and the Undiagnosed Diseases Network Foundation. — Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation

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 seven years, but in low and middle income geographies many families will never know the cause of their child’s suffering. As a result, many end up receiving inappropriate testing and ineffective therapies. If your family member has an undiagnosed genetic condition, and you would like more information, please contact iHope.

Content image — Images courtesy of Positive Exposure in collaboration with the Wilhelm Foundation

Despite evidence that clinical genomic sequencing should be 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. “We have waited for this moment for more than 30 years,” said Genetic Alliance CEO, Sharon Terry. “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."