We are excited to announce programs designed to expand access to genetic testing for patients who have been unable to access testing because of financial barriers. We are working with multiple labs to provide this service.
Rare Genomics Institute (RG) is happy to partner with leading genetic sequencing laboratory Illumina Inc. (NASDAQ: ILMN) as part of their iHope program, which provides free trio clinical whole genome sequencing to children affected by rare or undiagnosed diseases. Romina Ortiz, MHS, Co-founder, COO and VP of Patient Advocacy, is leading this operation for Rare Genomics. See a short video about iHope here.
Who is eligible?
Children who are suspected of having a rare or undiagnosed disease, who have two biologic parents who can also provide a blood sample and a physician that recommends the test.
Is there a cost associated?
There are no costs for the sequencing and interpretation. There may be cost associated with visiting your physician and drawing samples that you will be responsible for.
How long will it take to get results and will they be private?
In an estimated 90 days the results will be sent to your referring physician.
How do I apply?
Complete our RG application and a member of our Patient Advocacy Team will contact you for next steps to determine eligibility.
On a quarterly basis, a lab will offer one complimentary mtDNA analysis (mtSEEK) or nuclear gene analysis (nucSEEK Standard) to a patient. The test must be ordered by a physician.
How can a patient qualify for the program?
Patients must meet the following criteria:
1. Have a confirmed or suspected diagnosis of mitochondrial disease based on a physician’s clinical assessment.
2. Patient never had genetic testing.
3. Patient must be registered in the Mitochondrial Disease Community Registry (MDCR). Learn more about the MDCR and register here.
4. Have a financial barrier to receiving genetic testing (i.e. lack of insurance, insurance that does not cover testing, unable to afford the test).
How can patients/physicians participate?
1. Tell your physician about the program if you meet the criteria.
2. Have your physician register for the program here.
3. Patients must register in the MDCR now!
4. Patients must fill out basic, contact information here.
How does the program work?
Each quarter, UMDF will randomly select a physician from those who have registered for the program. The selected physician will be forwarded information from GeneDX about ordering the free test on your behalf. All information provided remains confidential between you and your physician. Physician will alert patient if they are selected to receive the free genetic testing services.
When will UMDF randomly select physicians for the program?
Physicians interested in participating in the program must register by Noon EST/EDT on the following days.
September 29, 2017
December 29, 2017
March 30, 2018
June 29, 2018
Physicians only need to register once to be considered for all of the above dates.
The UMDF Genetic Testing Program is part of UMDF’s Roadmap to a Cure initiative. Finding treatments and cures for mitochondrial disease requires faster and more accurate diagnosis for patients.