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.

Barbara and Keith Cameron

Join the CHM Registry

Join the CHM Patient Registry by clicking on your preferred language:
→   English / French / German / Portuguese / 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?

The American Society of Retinal Specialists provides a physician locator to help you find a retina specialist.

Genetic Testing

Anyone with an inherited retinal disease (IRD) should consider genetic testing. Genetic testing may be able to identify the mutated gene or genes 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 the availability of genetic testing has opened doors and brought information and clarity to many living with one of these rare eye diseases. Today there are approximately 100 recruiting, enrolling, or active clinical studies for IRDs on, the national resource housing information on all clinical studies across the country. The more patients and the medical community know about specific gene mutations, the faster clinical trials may progress.

Because of this, everyone with an IRD or suspected IRD should pursue genetic testing. Identifying and understanding the changes in your genes (mutations) that are responsible for vision loss is the first step in opening new possibilities for yourself and your family.

Genetic Testing – Your Options

Project CHM

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:

  1. Your physician needs to download the Project CHM Genetic Testing Voucher from CRF.
  2. Your physician should complete Carver Lab’s online request form. Select “Voucher” for method of payment.
  3. 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:

  1. 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.
  2. 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.

Patient & Family Support

For those living with CHM or their families, there are several ways to communicate with others in the same situation. Contact CRFC at and we can connect you with a peer.

Emotional Aspects of Vision Loss & CHM Part I:

Emotional Aspects of Vision Loss & CHM Chat Part II:

Email Support Group is a new CHM support portal that is accessible via desktop or Android or IOS apps and optimized for mobile and touch devices. The portal helps consolidate support chats into one centralized, searchable, non-social media-based location so everyone can find the help, information, and community they need. also allows for better compatibility with adaptive technology for an improved low-vision experience.
You can navigate in your native language by changing your profile settings.
Go to today and create your new account to get started.

Please note: These links are provided for informational purposes. The CRF does not monitor content of these groups.

Facebook Groups

Choroideremia (CHM)

Choroideremia Research Foundation Canada

Choroideremia CHM for Understanding (International)

Choroideremia Norway

Leben mit Choroideremia (German)

Choroideremia Greece

Choroideremia Awareness

Choroideremia Moms

Spouses of Choroideremia

Coroideremia (Portugese)

Asociación de Afectados por la COROIDEREMIA (Spanish)

CHM Moms for Each Other

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. For further information, please contact your local CBIB branch.

The CRF spoke to several eye doctors and asked for their input on supplements for CHMers. Please note, there is no clinical evidence that any of these supplements help CHM specifically. However, there is evidence these supplements may help the overall health of the eye.

Vitamins, Supplements & Exercise for Eye Health:
Supplements for CHMers (PDF)

The CRF highly recommends you speak to your own doctor before beginning any supplement regimen.

Supplement Recommended Dosage (Adult)
Lutein 20 mg/day
Omega-3 (Fish Oil) 200MG DHA + 400 EPA/day
Zeaxanthin 2 mg/day
N-Acetyl Cysteine (NAC) 300 mg/twice per day

Here are some general eye health nutrition tips from the Casey Eye Institute Ophthalmic Genetics Clinic:

  1. Eat vegetables and fruits which are high in lutein and zeaxanthin: There is some evidence that a diet that is rich in lutein and zeaxanthin may help protect the macula from oxidative damage by contributing to a layer of healthy macular pigments. Since the macula is the area of the retina that provides your best vision, it is probably wise to enrich your diet with foods that are high in these substances. These are generally healthy fruits and vegetables (including peppers, lettuce, asparagus, corn, broccoli, spinach, fresh collar greens, swiss chard, kelp, and kale) that may also reduce the risks of heart disease and cancers. Because lutein and zeaxanthin are only two of over 600 plant carotenoids, many of which may also be healthy, we recommend eating foods that are high in these compounds rather than capsule supplementation with lutein and zeaxanthin compounds alone. It’s recommend to consume 15,000 micrograms of lutein per day from dietary sources.
  1. Eat fish: The omega-3 fatty acids found in dark fish may help slow the loss of vision. PLEASE NOTE: The FDA has confirmed that fish is an important part of a healthy diet, but has recently recommended that women who might become pregnant, women who are pregnant, nursing mothers and young children avoid certain types of fish that may contain higher amounts of mercury. These fish include shark, swordfish, king mackerel and tilefish. The FDA encourages this group of people to avoid these fish with higher mercury content and, instead, to eat up to 12 ounces a week of fish that are lower in mercury, which includes canned light tuna, salmon, pollock and shrimp. Albacore and steak tuna have more mercury than canned light tuna and so should not be eaten more than once a week. The FDA also encourages people to check with local health advisories regarding fish caught by family and friends, and to limit consumption of that fish to once per week if local advisories are unavailable.
  2. Quit smoking: If you smoke, now is the time to stop because cigarette smoke is a strong risk factor for developing macular disease and making retinal disease worse. If you are unable to stop smoking on your own, your physician, the American Lung Association, or the American Cancer Society may be able to help. Cigarette smokers should avoid taking vitamins with beta-carotene since it increases the risk of lung cancer in smokers.

Here are some important tips from fellow CHMers!

  1. Annual Doctor Visit
    Every CHM patient should visit their eye doctor on an annual basis.
  2. Wear Sunglasses
    Always whenever outdoors! All doctors recommend UV protection sunglasses for CHMers. Sunglasses protect against glare and damaging rays to retina cells. Wraparound sunglasses can also reduce reflective glare. (HINT- Keep sunglasses on until you step indoors, reducing the time to adjust to indoor lighting)
  3. Wear a Cap or Hat
    The shade of the brim cuts down significantly on reflected glare. This is true for outside and indoor lighting.
  4. Put Glare Behind You
    Reduce eye strain and increase your ability to see what is around you. Choose the seat facing away from the window, harnessing that glare to light up your friends’ faces versus seeing them as a silhouette.
  5. Learn to Ask/Accept Help
    Being led through a restaurant, a dark venue or through crowds is both safer and reduces distress on those with you. Most people are happy to help. If help is offered but not needed, be gracious for their offer.
  6. Use a Cane
    Using a cane or an ID Cane, visually alerts folks that you may not see them. It’s a matter of safety for them and for you. When traveling, it is always good to have a backup cane. A broken or lost cane may not be easily replaced, adversely effecting your trip.
  7. Ask a CHMer
    The greatest resources available to help you in living with CHM are fellow CHMers from across the globe via email and CRF social media platforms! You don’t need to reinvent the wheel for coping with CHM. We can help! And if you have found a better way of coping with CHM, we all want to know!
  8. Exercise & Lifestyle (PDF)

The effects of CHM can cause challenges both at work and daily living. The good news is that there are growing technologies to help compensate for those challenges. Adaptive software for computers, and apps for smart phones and smart devices can greatly enhance your productivity and independence.


CHMer computer and tablet challenges are incremental difficulties seeing/tracking the cursor, eyestrain from glare, and lack of contrast and readable font size, which can require screen readers. Solutions are available and vary greatly depending upon your computer operating system.

(Windows vs. Apple)

Windows does have some accessibility features but generally requires investing in the purchase of additional third-party accessibility software to customize the screen to your visual needs and screen readers. Those software systems include:

    • JAWS (Freedom Scientific)
    • MAGic (Freedom Scientific)
    • ZoomText (AiSquared)
    • Dragon (Nuance)

To connect with a Microsoft expert on Microsoft Office and Windows accessibility questions, dial:
1-800-936-5900. Available Monday to Friday from 6am to 10pm (PST) and Saturday to Sunday from 7am to 6pm (PST).

Apple is the accessibility leader with significant built-in features on laptops and iPads. Apple also has a dedicated help center to assist you with any product challenges. Their most useful accessibility features include:

    • Smart invert colors
    • Voiceover
    • Customizable fonts
    • Zoom
    • Accessibility shortcut key

To contact Apple Accessibility Support over the phone for iPhone, iPad, IWatch and MacBooks, dial:

    • United States: 1-877-204-3930
    • United Kingdom: 0800 107 6285
    • Australia: (61) 1-300-365-083
    • China mainland: 400-619-8141 (Mandarin only)

Low Vision Devices Intro:

Blindness Device Intro:

Adaptive Computer Software:


Intro to Mobile Apps Webinar:

I-Phone 7 Technology Tutorial:

2020 iPhone 11 Pro Max, iOS 13.5 Accessibility Features for Low-Vision:

Smartphones have become a game changer for CHM low-vision users by bringing accessibility with you wherever you are. iPhone is the leader in smartphone accessibility (see above). However, there is an ever-growing market of third-party accessibility apps available for iPhones and other phone manufacturers.

Accessibility Apps

These apps can help in generally two ways: 1) connecting you to a sighted person via your camera to assist you or 2) using your phone and the app for assistance. All are available via your app store for free and purchase. Here are some of the most frequently apps used by CHMers:

Sighted Assistants

    • Be My Eyes Connects users to volunteers to assist you by seeing/describing things via your phone camera (FREE)
    • Aira Connects users to trained guides to assist you in seeing things via your phone camera or guiding you via GPS (Free for calls under 5 minutes… free in certain airports… paid subscription for longer use)
    • Lazarillo Guides users through their city and building environments with real-time voice messages and connects users with businesses through accessible online shopping and notification services

In-Phone Assistance

Apps that work within your phone. Some may require internet/Wi-Fi.

    • KNFBReader Reads documents aloud.
    • Seeing AI A free app that can function as a document reader, currency identifier, barcode scanner, light detector, short text reader, and a handwriting reader.
    • DocsToGo A handy app for documents and PDFs. It allows you to pinch out (i.e. zoom) to raise the font size and it will re-justify all the text to stay within the screen. Super handy for presentations.
    • NIGHT VISION Uses the phone camera with slide control to greatly increase available light in dark locations.


Many CHMers know the value of carrying a small pocket flashlight. And yes, technology now gives us USB rechargeable micro flashlights like Streamlight 66608 Microstream USB Pocket Light.

Smart Home Controllers

Google Home or Amazon Echo are examples of Wi-Fi speakers that double as smart home control hubs and personal assistants. These devices can be programmed to sync with other compatible devices to turn lights on and off, adjust the thermostat, lock doors, make coffee, play music, read the news and weather, dispense measured amounts of water from a faucet, control a television and a wide variety of other tasks by voice command. Multiple devices can be installed in various rooms to provide voice-activated services throughout the home.

Wearable Devices

For more information on the future of wearable assistive technology, please view the following webinar:
Sensory Augmentation: A ‘Tango’ with Advanced Wearables and Microservices, John-Ross Rizzo, MD.

A key part to maintaining independence when living with CHM‘s vision changes is in learning to adapt your environment, especially at home. Our primary challenges are in lighting and CONTRAST. Many solutions are simple changes. Others might require professionals. It will depend upon where your vision is now and in the future. Here are options that fellow CHMers have found useful.

Adjust the Lighting

  • Add floor and table lamps around the living room, dining room, kitchen and bedroom. Clip-on lights can be placed strategically around the house.
  • Use lighting that is 60–100 watts. Replace burnt-out bulbs regularly.
  • Use adjustable blinds or sheer curtains to allow for natural light throughout the home.
  • Experiment with lighting to find out which works best for your individual needs. There is halogen, fluorescent, incandescent or flood lighting. Note: fluorescent light bothers many visually impaired people.
  • In case you need additional light at night, keep a flashlight or heavy-duty light on a keychain handy.
  • Make sure light is uniform throughout your entire hallway to more easily identify where it curves or ends.

Kitchen LightingKitchen Lighting

Well-lit work surfaces can make all the difference in the kitchen. Adding under cabinet LED lighting can make a huge difference. There are DIY kits or contact a professional electrician.

Kitchen of Contrast

In the Kitchen with CHM:

Contrast is key in the kitchen. From the color of counter tops to the tools and the plates you use, contrast makes the difference in safety and use. Many of these are available online and locally:

  • Contrasting Kitchen PlacesWhite and Dark Cutting Boards allow you to chop safely i.e. – white onions chopped on a dark cutting board.
  • Knives/Tools Contrast is as simple as choosing tool colors opposite to the color of your counter tops making it easy and safe to find them.
  • Large Print Measuring Cups are available in clear and colors that will allow for easy reading when measuring.
  • Plates with Borders – White plates with wide color edges make a big difference for someone with low vision to be able to see not only where the plate is but what is on it.
  • Avoid using clear glass dishes and cups – they are more difficult to see.

Rearrange the Furniture

Rearranging the furniture in your house can help you avoid injury and move around more easily. You can:

  • Place mirrors strategically to avoid glare or reflecting light.
  • Keep some chairs near the windows in case you want to read, work or craft in the natural light.
  • Arrange furniture close together so that you can easily converse with others.
  • When buying new furniture, try to pick upholstery with texture. This will help you more easily identify the different pieces of furniture.
  • Place brightly colored vases or lamps near key items of furniture so that you can locate the furniture more easily.

Eliminate Safety Hazards

Feeling safe inside your own home is important. There are a number of things you can do to prevent falls and other injuries. You can:

  • Keep desk and table chairs pushed in. Train your family to do the same. All of the time. No exceptions.
  • Use non-skid, non-glare products to clean and polish your floors. Avoid waxing floors, which can make floors slippery.
  • Remove low-lying coffee tables and end tables that might be trip hazards.
  • Make sure electrical cords are removed from pathways or taped down securely so you won’t trip.
  • Tape down any area rugs you have and replace any worn carpeting or floor covering.
  • Keep all floors dry. Wipe up any spills immediately.
  • Install grab bars or safety rails in high-slip areas like your bathroom or stairs.
  • Mark step edges with yellow reflective tape so that you can easily identify them.
  • Always keep your fire extinguisher and first aid kit in the same, easily accessible, place.
  • Make sure all exits are marked with a bright, contrasting color in case of an emergency.
  • Check smoke and fire alarms often. Ensure they are loud enough that you can hear them throughout the house.

Tactile Bump Dots

Tactile Bumps on ApplianceControls on appliances can be visually hard to see with low vision. But a few strategically placed bump dots change that. Tactile bump dots are small self-adhesive dots that can be placed on appliances to tactilely indicate specific controls to touch or turn. Inexpensive dots come in clear and multiple colors and sizes. For example, putting a dot on a microwave number touch pad on the 1 minute and 30 second buttons allow you to easily set a time and operate the microwave.

Bump dots are great to travel with because you can mark your hotel door or the controls on the coffee pot.Tactile Bumps on Appliance

While formal blind rehabilitation training can take place at a variety of levels, locations, and varying stages of CHM, consider the following:

  • What are the areas that you find more challenging?
  • What aspects of daily life are most effected by your vision loss?
  • What resources are in your community that can help reach your goals of added independence & safety prior to professional mobility or orientation? (Transportation, technology, adaptations to home/office, etc.)
  • Professional Instruction: Cane Training; Adaptive Tools in Home, Assistive Technology; Computer/Phone adaptations; Guide Dogs and more….

Is a Guide Dog in Your Future?:

Choroideremia may limit some of your career options, but it doesn’t limit your opportunities for a very successful and prosperous life!

Today’s technology, as well as using different adaptations, allows people with vision loss to do just about any job you can think of. The following list, although not exhaustive, is meant to give a general idea of the different careers and jobs done by people who are blind or visually impaired:

  • Teachers, college professors and guidance counselors
  • Social workers and psychologists
  • Doctors, nurses, and occupational and physical therapists
  • Masseuses and chiropractors
  • Rehabilitation teachers and counselors
  • Customer service representatives
  • Restaurant and store workers
  • Factory workers
  • Freelance writers, journalists and TV and radio broadcasters
  • DJs and musicians
  • Attorneys, judges, and politicians
  • Executive directors and managers
  • Coaches and athletes
  • Authors and motivational speakers
  • Chefs
  • Architects
  • Researchers, engineers, and scientists
  • Artists and photographers

Products & Services

Below are links to products that some of our members have found useful. This list is provided for informational purposes only. CRFC does not endorse any of these products.

Eye Wear

Cocoons Eye Wear
OrCam Wearable Assistive Devices


Berryessa Lighting Solutions
Stella Lighting


Eschenbach Filters & Magnifiers


AmbuTech Canes
Revolution Advantage Canes
Free Canes


Freedom Scientific Low Vision Products
Humanware Accessibility Software
Computers for the Blind
BARD Mobile Free Audio Books

Various Products

LS&S Products for the Visually Impaired
Optelec Low Vision Wearables and Daily Living Aids


Council of State Administrators of Vocational Rehabilitation

International Resources

Retina International
Choroideremia Research Foundation USA

Travel Assistance

Air Charity Network:
Healthcare Hospitality:
Mercy Medical Angels:
Air Flight East:

Patient Stories & Videos

The below stories and videos are courtesy of our International Partner, CRF.

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!