For Patients & Families
Part of our mission is to provide information and resources for patients with choroideremia and/or their family members.
For further help, please feel free to contact us.
Find a Doctor
Are you looking for a retina specialist?
The American Society of Retinal Specialists provides a physician locator to help you find a retina specialist.
Anyone with an inherited retinal disease (IRD) should consider genetic testing. Genetic testing may be able to identify the mutated gene or genes, as well as the contributing genetic variants responsible for your vision loss. Armed with this important information, you and your doctor can determine the best course of action for your disease and discuss whether clinical research might apply to you.
If you were tested a few years ago and you didn’t receive a conclusive result—or received a negative one—think about getting tested again. Genetic tests have improved, more details about your specific genetic variations or mutations may be revealed, research is advancing, and a person may learn more from a newer test.
When you identify and understand the gene mutations responsible for vision loss, you may open new possibilities for yourself and your family. There are more than 300 genes known to cause IRDs, and further, more than 300 different variants that can cause CHM. The availability of genetic testing has opened doors and brought information and clarity to many living with one of these rare eye diseases.
The future will hold gene and variant specific therapies, and as new potential treatments become available, details about these clinical trials will be posted on ClinicalTrials.gov, a resource with information on international clinical studies throughout the US and beyond. The more patients and the medical community know about specific gene mutations and variants, the faster clinical trials may progress. Because of this, everyone with an IRD or suspected IRD should pursue genetic testing.
Because of this, everyone with an IRD or suspected IRD should pursue genetic testing.
Free Genetic Testing – Your Options
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, free 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.
Genetic Testing Outside the U.S.
Please note at the present time, the My Retina Tracker program is only available in the United States. Click here to visit the National Center for Biotechnology Information’s website and view a comprehensive list of companies worldwide which offer genetic testing for choroideremia.
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: Benefits include: membership voting privileges; weekly e-newsletters 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; contact call; weekly e-newsletters and annual report (mail or email option); 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; contact call; weekly e-newsletters and annual report (mail or email option); 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 contact call; weekly e-newsletters and annual report (mail or email option); one time recognition in CRF’s annual report; 25% off merchandise and conference; invitation to networking events such as researcher receptions** at conferences. Become a Lifetime Member by clicking here.
* Existing Lifetime Members will receive the new benefits of that level & require no further action.
** Individuals may also qualify to attend Networking Events by serving as a volunteer with, or fundraiser for, CRF.
Patient & Family Support
CRF offers a variety of ongoing opportunities to socialize online with your fellow CHM family members via Zoom. Regularly scheduled events include:
- Music Trivia
- Sports Trivia
- Beer Appreciation Club
- Book Club
- Moms of CHMers Chats
- CHMer Convos
- Holiday Parties
- … and more.
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
UK Choroideremia Friends and Support https://www.facebook.com/groups/322013511944104
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/
Spouses of Choroideremia https://www.facebook.com/groups/784934478268986/
WhatsApp / Twitter / Instagram
Join the conversation on the Choroidermia CHM chat on WhatsApp, on Twitter, and on Instagram.
Over 225 videos have been posted to CRF’s YouTube channel, https://www.youtube.com/curechm, with information on everything from guide dogs, to assistive technology, emotional/social support and education, interviews with other patients, family members and researchers, science updates, and much, much more!
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 suggestion, 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.
Cocoons Eye Wear https://cocoonseyewear.com/cocoons-polarized-fitovers
OrCam Wearable Assistive Devices https://www.orcam.com/en/
Berryessa Lighting Solutions https://www.berryessadesigns.com/about-us.html
Stella Lighting http://www.stellalighting.com/
Eschenbach Filters & Magnifiers https://www.eschenbach.com/products/absorptive-filters.asp
Zoomax Technology Co., Limited https://www.zoomax.com
AmbuTech Canes https://ambutech.com/
Revolution Advantage Canes http://advantage-canes.com/
Free Canes https://www.nfb.org/programs-services/free-white-cane-program
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/
LS&S Products for the Visually Impaired https://www.lssproducts.com/
Optelec Low Vision Wearables and Daily Living Aids https://us.optelec.com/
Council of State Administrators of Vocational Rehabilitation https://www.csavr.org/stateagencydirectory
Retina International http://www.retina-international.org/our-members/
Choroideremia Research Foundation Canada https://curechm.ca/
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/
Guaranteed Rate Foundation: https://www.gr-foundation.org/
Modest Needs: https://www.modestneeds.org/
Vital Options: https://www.vitaloptions.org/grant-program
Patient Stories & Videos
CHMer Mike McCarthy explains what it is like to live with choroideremia in the video below.
Here’s what the Choroideremia Research Foundation is doing to make a difference!
Meet More CHMers
- Meet Mike Martens
- Meet Brian Counter
- Meet Neal Bench
- Meet Chris Moen
- Meet Sam Harding
- Meet Wayne Thompson
- Meet Kristin Ging
- Meet Tod Purvis
- Meet Justin Purvis
- Meet Ron and Danny Downs
- Meet Jan Laudenbach
- Meet Sebastian Joachim
- Meet Bob Hrdy