My Retina Tracker
Blueprint Genetics in partnership with the Foundation Fighting Blindness and InformedDNA offers the My Retina Tracker Program®, which is an open access, fee genetic testing program for individuals living in the United States with a clinical diagnosis of an inherited retinal degeneration (IRD).
→ Go to the Blueprint Genetics‘ My Retina Tracker website to get started.
As part of this program, there is free genetic counseling through InformedDNA, the leader in counseling individuals and families affected by IRDs. Although it is not required for participation, this program offers an easy opportunity to join the My Retina Tracker Registry. The Registry provides individuals the opportunity to contribute to research and the option to be contacted from the Foundation Fighting Blindness about relevant clinical trials. To get started, please talk to your doctor about the program.
ID Your IRD
Eye Want 2 Know® aims to equip those living with an IRD with the knowledge and resources they need to get started with genetic testing. Their ID YOUR IRD initiative provides free genetic testing for people in the U.S. who may be living with an IRD. The test results provide genetic information that may empower people and their healthcare providers to make more informed decisions and tailor their disease management plans.
If you got tested more than 5 years ago and didn’t get a definitive result, think about getting tested again, because today’s tests can identify more genes—at no cost to you. (Participants are responsible for any other costs they may incur because of participating in the program, such as doctors’ visits.
→ You can get more information plus your physician can order an ID Your IRD genetic test on the Eye Want 2 Know website.
Project CHM is a collaborative program between the CRF and the Carver Laboratory at the University of Iowa and a generous donation by PTC Therapeutics to provide genetic testing for those affected with CHM.
For free genetic testing through Project CHM, ask your PHYSICIAN to perform the following steps:
- Your physician needs to download the Project CHM Genetic Testing Voucher from CRF.
- Your physician should complete Carver Lab’s online request form. Select “Voucher” for method of payment.
- Your physician will send a blood sample drawn from you to Carver Lab, with the voucher.
Afterwards, YOU should follow up with these two steps:
- To increase insurance reimbursement for genetic testing, please submit your genetic testing to your insurance company. Carver Lab will send an invoice marked PAID to patients, who should then file the invoice with their insurance company.
- Please register with the CHM Patient Registry.
Physicians should receive results from the genetic testing within 3 months to share with their patients. If results have not been received within 3 months, please follow up with your physician and Carver Laboratory.
If positive results are confirmed, as CHM is an inherited retinal disease, other family members should also be considered for testing.
Please note that the voucher expires on December 31, 2022. Subject to available funds, this program may be extended so feel free to check back after this date.
The Carver Lab is a certified non-profit laboratory that offers low-cost genetic testing for people with retinal diseases like CHM. The CRF is proud to partner with them to assist people affected with CHM to complete genetic testing.