For Patients & Families
The information in 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 to register:
English, French, German, Portuguese, or Spanish

What is the CHM Registry
The Registry is a collection of names and some basic contact information of all the men and women around the world who have CHM.
Why Should I Join?
- Clinical trial and study opportunities will start with this list of names.
- Enable the collection and sharing of information from a large number of patients, with the research community
- Connects scientists studying CHM with people in The Registry.
- Amplifies your voice. Opportunity to participate in “Patient Preference and Experience” surveys to come in the future.
- 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
United States
Canada
If you are a Retinal Specialist and would like to be added to this list, please contact Cory MacDonald by email.
Free Genetic Testing through Project CHM
The Choroideremia Research Foundation is happy to announce that 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. This has been made possible through funding by the CRF and a generous donation by PTC Therapeutics (www.ptcbio.com). Anyone interested in being part of a Clinical Trial or eventually being treated for CHM must have a Genetic Test confirming their CHM diagnosis.
To have free genetic testing performed through Project CHM, you can follow the following steps:
- Download the Project CHM Genetic Testing Voucher. The completed form will be sent with your patient’s blood sample.
- Complete the online request form at Carver Lab for your patient. For method of payment, select “Voucher”.
- Have a blood sample drawn and sent to the Carver Lab including the voucher.
- In an effort to increase insurance reimbursement for genetic testing, we are asking all Project CHM participants to submit their testing to their insurance company. Patients will receive an invoice from the Carver Lab marked PAID and should file this with their insurance carrier upon receipt.
- CRF is also asking all Project CHM patient participants to register with the CHM Patient Registry by clicking on your preferred language to register English, French, German, Portuguese, or Spanish– the Patient Registry takes less than 5 min to complete.
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 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 current treatment or cure available for Choroideremia, there are a number of 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 FREE, and 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.
Patient & Family Support
For those living with CHM, whether it be parent, spouse or affected CHMer, there are several ways you can receive free support services. These are all great resources for you to get information and input from people who are walking the same path you are. To speak with another patient or family member directly, call or email the CRF at 800-210-0233 or info@choroideremia.org and we can connect you with a peer.
Email Support Group
To subscribe to the free email support group, send an email to: choroideremia-subscribe@yahoogroups.com
There are several closed Facebook Groups that may offer ways for you to connect with others in similar circumstances.
Please note: These links are provided for informational purposes. The CRF does not monitor content of these 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 some basic lifestyle changes. Below are some tips regarding choroideremia eye health and daily living that have been assembled by medical professionals and fellow CHMers. In this Toolkit, we will provide tips on:
If you would like to contribute a tip, please click here to email us.
Resources
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/
Solar Comfort Eye Wear http://solarcomfort.diopticssunwear.com/shop/solar-comfort-sunglasses/
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/
Technology
Freedom Scientific Low Vision Products https://www.freedomscientific.com/products/lowvision/
Humanware Accessibility Software http://www.humanware.com/en-usa/home
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/
The search for a cure to CHM is not possible without our generous supporters.