The iHope Program is a philanthropic initiative launched by Illumina to make clinical whole-genome sequencing (cWGS) accessible to underserved children facing rare and undiagnosed genetic diseases (RUGD). It operates through the Illumina Clinical Services Laboratory (ICSL) in San Diego, California.
Children account for approximately 50% of patients affected by rare diseases. Without a correct diagnosis and treatment, 30% of these children will not reach their fifth birthday. The program was created to address the challenges patients and their families face with RUGD. Many of these families are financially disadvantaged and lack access to next-generation sequencing-based testing or other molecular-based diagnostic procedures.
The iHope Program and its clinical collaborators aim to end the long diagnostic journey children and their families endure to find answers. The cWGS testing provided by the iHope Program can end unnecessary testing and other interventions, enable changes to clinical management, and optimize patient care. The program also provides important genetics and genomics education for patients, families, and their RUGD communities.
"Understanding the scope and size of the population affected by rare diseases, we have a moral imperative to increase the visibility of this global health problem and help find solutions for the children and families who are suffering."
Illumina collaborates directly with patient groups, clinical institutions, and academic centers around the world to identify patients appropriate for testing. Currently, with over 20 collaborations, the iHope program continues to grow globally. Collaborators in the US include nonprofits (e.g., Rare Genomics Institute), academic centers (e.g., Washington University), and children’s hospitals (e.g., Le Bonheur Children’s Hospital).
Clinical experts including pediatric specialists, medical geneticists, and genetic counselors affiliated with collaborating iHope institutions make referrals to their institutions' iHope Program. Participating pediatric patients should have undiagnosed conditions suspected to be of genetic origin and have tangible barriers to accessing cWGS services. Families interested in the iHope Program can learn more through their clinician or contact the Illumina iHope Team.
Eligible participants selected by the iHope program collaborators will receive cWGS at no cost.
Illumina iHope collaborators must have:
iHope Genetic Health is a program governed and operated by Genetic Alliance. It expands on the Illumina iHope model by empowering laboratories around the world to provide cWGS at no charge. iHope Genetic Health leverages genomic sequencing technology from Illumina, donations from philanthropists, and technology partners to make cWGS accessible to underserved communities around the world.Learn More