A large number of children are affected by rare and undiagnosed diseases. It is our duty to help increase visibility and provide answers for the children and families who are enduring this odyssey.
About the iHope Network
The iHope Network is a philanthropic consortium of member institutions who have committed to providing whole genome sequencing (WGS) to underserved families. Through whole-genome sequencing – the process of determining the genetic code or instructions in the cells within a person’s body – the iHope Network and their respective clinical partners strive to end years-long diagnostic odysseys. These odysseys average seven years in length and include multiple inconclusive tests, surgeries and procedures, many of which do not result in answers or treatment options for these children and their families.
With precision medicine and large-scale genomic initiatives being launched across the globe, genomics is reaching an inflection point in public awareness. The iHope Network aims to build on that public awareness by demonstrating how next-generation sequencing can create a significant impact – by helping undiagnosed patients and their families find long sought-after answers.
Today, the iHope Network consists of clinical laboratory members: Illumina, Genome.One, GeneDx, NY Genome Center, HudsonAlpha and their affiliate healthcare partners.
The iHope Network members have committed to a minimum philanthropic donation of 10 whole genome tests per year (10 patients). Additionally, iHope Network organizations have agreed to donate the variants identified through iHope to public databases, like Clinvar, which are freely accessible, public archives of reports of the relationships among human variations and their related symptoms or diseases. By doing so, the public wealth of knowledge will continue to grow and provide benefit to many more patients who depend on the precision of genomic medicine.
The Power of iHope
Families of children with an undiagnosed disease often face years-long diagnostic odysseys. Hear from health care providers and families who have participated in iHope, a philanthropic program from Illumina that helps patients access clinical whole-genome sequencing. Through its growing global network, iHope is helping providers and patients find the answers they seek.
Sophia and her family spent years in search of a diagnosis for her condition. Finally, a de novo mutation was discovered through a clinical whole genome sequencing (cWGS) test she received from the Illumina iHope Network. Hear her parents, her geneticist Dr Christian Schaaf of Baylor College of Medicine, and Illumina Senior Medical Scientist Dr John Belmont discuss what it means to have a diagnosis after a long journey.