For Patients & Families
This section is designed to provide information for patients with choroideremia and/or their family members.
Join the CHM Registry
Join the CHM Patient Registry by clicking on your preferred language:
English, French, German, Portuguese, or Spanish

What is the CHM Registry?
The Registry is a collection of names and basic contact information of people around the world who have CHM.
Why Should I Join?
- Individuals who register will receive updates on new clinical trials and other research opportunities.
- Enable the collection and sharing of information from a large number of patients within the research community.
- Opportunity to participate in “Patient Preference and Experience” surveys.
- Improves chances of drug development.
How Long will Sign-up Take?
Less than 5 minutes!
Will My Information be Shared?
All of the information provided will be treated as confidential and that under no circumstance will personal information will be shared with any other source, or third party.
Find a Doctor
Are you looking for a retina specialist?
Here is a link to the American Society of Retinal Specialists physician locator: https://www.asrs.org/find-a-specialist
Free Genetic Testing through 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). The program provides individuals with an IRD access to a 285 gene panel targeting relevant genes associated with IRD, including the difficult to sequence RPGR gene. 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, which 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.
https://blueprintgenetics.com/my-retina-tracker-program/
Free Genetic Testing through Eye Want 2 Know
There are more than 260 genes known to cause these inherited retinal conditions, and the availability of genetic testing has opened doors and brought information and clarity to those living with one of these rare eye diseases.
With research efforts intensifying, it is more critical than ever to speak with your doctor about genetic testing. Today there are more than 100 recruiting, enrolling or active clinical studies for inherited retinal diseases on clinicaltrials.gov, the national resource housing information on all clinical studies across the country.
If you were previously tested more than five years ago and you didn’t receive a conclusive result – or any result at all – think about getting tested again. Genetic tests have improved, research is advancing, and a person may learn more from a newer test, especially with the identification of new genes.
Knowledge is power, and the more patients and the medical community know about specific gene mutations, the faster clinical trials may progress.
Free Genetic Testing through Project CHM
For a limited time, free genetic testing is available to anyone who has received a clinical diagnosis of CHM but has not undergone genetic testing. Anyone interested in being part of a Clinical Trial or eventually being treated for CHM must have a Genetic Test confirming their CHM diagnosis.
Why is Genetic Testing for CHM Important? https://www.youtube.com/
To have free genetic testing performed through Project CHM, ask your physician to go to https://www.curechm.org/for-medical-professionals/#testing and follow the steps.
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 the 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, 2020. Subject to available funds, this program may be extended so feel free to check back after this date.
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 (www.ptcbio.com) to provide genetic testing for those affected with CHM. The Carver Laboratory is a certified non-profit laboratory that offers low-cost genetic testing for people with retinal diseases like CHM, and the CRF is proud to partner with them to assist people affected with CHM to complete genetic testing.
If you have diagnosed any patients with Choroideremia, it is important to have the diagnosis confirmed through genetic testing. A genetic test is typically performed on a blood sample and identifies the specific genetic mutation in the CHM gene. A positive genetic test with a mutation in the CHM gene provides confirmation that your patient has CHM and not another similar retinal disease. Genetic testing is mandatory for those who want to be enrolled in a clinical trial or other research study on CHM.
Clinical Trials
While there is no treatment or cure available for choroideremia, there are clinical trials currently underway testing potential treatments for CHM. Individuals interested in being part of a clinical trial, or eventually being treated for CHM when a treatment or cure becomes available will need to have had a genetic test to confirm their diagnosis of choroideremia. These tests involve a simple blood draw that is sent off to an accredited lab where a diagnosis of CHM can be confirmed at a genetic level.
Please note that any information regarding clinical trials or genetic testing is being provided for informational purposes only. The Choroideremia Research Foundation does not endorse any specific company, clinical trial or genetic test. Please discuss any questions you may have with your healthcare provider.
A number of clinical trials and natural history studies for Choroideremia are currently available and listed on the National Institutes of Health’s clinicaltrials.gov website.

CRF Membership
The Choroideremia Research Foundation is a member-based organization. Membership is open to any interested person. Membership is by household and covers all adult (18+) members of your household.
Please join us today – we will keep you informed of recent updates in research and other news related to CHM. Information shared with us is confidential.
CRF Membership Levels
FREE Membership (requires annual renewal): Benefits include: membership voting privileges; annual conference call; and quarterly newsletter and annual report (mail or email option). Become a FREE Member by clicking here.
Standard Membership (requires annual renewal): membership is $60 annually and benefits include: membership voting privileges; annual conference call; quarterly newsletter and annual report (mail or email option); recognition on CRF’s website, social media and annual report; and 25% off merchandise and conference. Become a Standard Member by clicking here.
Standard Membership (automatic renewal): membership is $5 a month and membership automatically renews on a month-to-month basis. Benefits include: membership voting privileges; annual conference call; quarterly newsletter and annual report (mail or email option); recognition on CRF’s website, social media and annual report; and 25% off merchandise and conference. Become a Recurring Standard Member by clicking here.
Lifetime Membership*: membership is a one-time cost of $600. Benefits include: membership voting privileges; annual conference call; quarterly newsletter and annual report (mail or email option); recognition on CRF’s website, social media and annual report; 25% off merchandise and conference; annual personal letter or call from key staff or board member; invitation to VIP events** at regional meetings and conferences including CRF Board, CRF Scientific Advisory Board, and researchers meetings. Become a Lifetime Member by clicking here.
*Existing Lifetime Members will receive new Lifetime Membership level benefits and require no further action.
**Individuals may also qualify to attend VIP Events by serving as a volunteer with, or fundraiser for, CRF.

Patient & Family Support
For those living with CHM or their families, there are several ways to communicate with others in the same situation. Contact CRF at 800-210-0233 or info@choroideremia.org and we can connect you with a peer.
Emotional Aspects of Vision Loss & CHM Part I: https://www.youtube.com/watch?v=bAceZlFPR4A
Emotional Aspects of Vision Loss & CHM Chat Part II: https://www.youtube.com/watch?v=ygihlRYb9IQ
Email Support Group
Please note: These links are provided for informational purposes. The CRF does not monitor content of these groups.
Facebook Groups
Choroideremia (CHM) https://www.facebook.com/groups/Choroideremia/
Choroideremia CHM for Understanding (International) https://www.facebook.com/groups/1388456481446308/?ref=bookmarks
Choroideremia Norway https://www.facebook.com/CHMNorthNorway/
Leben mit Choroideremia (German) https://www.facebook.com/groups/606431343168032/about/
Choroideremia Research Foundation Canada https://www.facebook.com/crfcanada/
Choroideremia Greece https://www.facebook.com/greecesopranochoroideremia.greece
Choroideremia Awareness https://www.facebook.com/Choroideremia-Awareness-133138336739037/
Choroideremia Moms https://www.facebook.com/groups/978428405667029/
Spouses of Choroideremia https://www.facebook.com/groups/784934478268986/
Coroideremia (Portugese) https://www.facebook.com/Coroideremia-164001050760710/
Asociación de Afectados por la COROIDEREMIA (Spanish) https://www.facebook.com/coroideremia/
CHM Moms for Each Other https://www.facebook.com/groups/334819910042088/
Patient Toolkit
Living with CHM’s progressive vision loss brings with it challenges that can be mitigated or lessened by adopting basic lifestyle changes. Below are some tips regarding choroideremia eye health and daily living that have been assembled by medical professionals and fellow CHMers:
If you would like to contribute a tip, please click here to email us.
Products & Services
Below are links to products that some of our members have found useful. This list is provided for informational purposes only. CRF does not endorse any of these products.
Eye Wear
Cocoons Eye Wear https://cocoonseyewear.com/cocoons-polarized-fitovers
OrCam Wearable Assistive Devices https://www.orcam.com/en/
Lighting
Berryessa Lighting Solutions https://www.berryessadesigns.com/about-us.html
Stella Lighting http://www.stellalighting.com/
Magnifiers
Eschenbach Filters & Magnifiers https://www.eschenbach.com/products/absorptive-filters.asp
Mobility
AmbuTech Canes https://ambutech.com/
Revolution Advantage Canes http://advantage-canes.com/
Free Canes https://www.nfb.org/programs-services/free-white-cane-program
Technology
Freedom Scientific Low Vision Products https://www.freedomscientific.com/products/lowvision/
Humanware Accessibility Software http://www.humanware.com/en-usa/home
Computers for the Blind https://www.computersfortheblind.org/
BARD Mobile Free Audio Books https://www.loc.gov/programs/national-library-service-for-the-blind-and-print-disabled/about-this-service/?cid=loc-ppc_s=google_c=brandkeywords_ag=bard_kw=nls-bard
Various Products
LS&S Products for the Visually Impaired https://www.lssproducts.com/
Optelec Low Vision Wearables and Daily Living Aids https://us.optelec.com/
Services
Council of State Administrators of Vocational Rehabilitation https://www.csavr.org/stateagencydirectory
International Resources
Retina International http://www.retina-international.org/our-members/
Choroideremia Research Foundation Canada https://curechm.ca/
Travel Assistance
Air Charity Network: http://aircharitynetwork.org/
Healthcare Hospitality: https://www.hhnetwork.org/about-us
Mercy Medical Angels: https://www.mercymedical.org/request-assistance
Air Flight East: https://angelflighteast.org/
Financial Resources
Guaranteed Rate Foundation: https://www.gr-foundation.org/
Modest Needs: https://www.modestneeds.org/
Vital Options: https://www.vitaloptions.org/