iHope Program

iHope Program

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). 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. Illumina strives to end the long diagnostic odysseys of inconclusive testing and unnecessary medical interventions for these children and their families.

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What is the origin of the iHope Program?

The iHope Program was created to address the challenges faced by patients with RUGD and their families. Many of these families face financial hardship and lack access to next-generation sequencing-based testing. In fact, many are not able to access any kind of molecular testing. The iHope Program seeks to help undiagnosed patients and their families find long sought-after answers by providing access to cWGS.

What is the ultimate goal for the iHope Program and its supporters?

The goal of the iHope Program and its clinical supporters is to provide patients and their families with precision genomic diagnoses. This initiative can end needless testing and other unnecessary interventions, enable changes to clinical management, and optimize patient care. Ancillary benefits of the program include genetics and genomics education for patients and their 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."

Francis deSouza, Illumina President and CEO
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Who collaborates with Illumina’s iHope Program?

Illumina currently collaborates directly with more than 20 patient groups and clinical sites that work with the community and clinicians to identify patients appropriate for testing. Collaborators in the US include nonprofit advocates such as Rare Genomics Institute, academic centers such as Washington University, Children’s Hospitals such as Le Bonheur Children’s Hospital, and other health care institutions around the world.

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How can patients/clinicians/providers be part of this effort?

Clinical experts, including pediatric specialists, medical geneticists, and genetics counselors affiliated with collaborating iHope institutions, make referrals to their institutional iHope Program. Participating pediatric patients should have undiagnosed conditions suspected to be of genetic origin and have tangible barriers to accessing cWGS. Patients and families interested in the iHope Program can find out more from their clinician at a participating organization.

Is there a cost associated with services provided by the iHope Program?

Eligible program participants selected by the iHope program collaborators will receive cWGS at no cost.

What are the requirements for sites that collaborate with the Illumina iHope Program?

Illumina iHope collaborators have:

  • An underserved pediatric population where cWGS is needed
  • Clinical experts who can refer children with financial need and undiagnosed conditions suspected to be of genetic origin
  • A single point of contact within their institution serving as a dedicated liaison between institutions to facilitate operations
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Illumina recently established iHope Genetic Health. How is this program related to the current Illumina iHope Program?

The Illumina iHope Program is a philanthropic program managed and operated through the Illumina laboratories based in San Diego, California. This program collaborates directly with pediatric health care providers, organizations, and academic institutions.

iHope Genetic Health, a program governed, managed and operated by the nonprofit Genetic Alliance, will expand the Illumina iHope Program by enabling other laboratories to provide cWGS at no charge. and to make cWGS broadly accessible to low- and middle-income communities around the world. Building on the model of the Illumina iHope Program, iHope Genetic Health Leverages contributions of genomic sequencing technology from Illumina Inc, and donations from philanthropists and technology partners, iHope™ Genetic Health will provide contract awards that enable genomic testing across the globe.

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Who can I get in touch with to learn more?

Illumina iHope Program: Contact the Illumina iHope Team at iHopeTeam@illumina.com
iHope Genetic Health: Contact Genetic Alliance

View Press Release 2021
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