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Patient Resources

There are a variety of resources at the federal, state and local level designed to help people with both inherited retinal conditions as well as medical conditions. Please view our curated list of patient resources below.

Select A Topic to Learn More:

Central Serous Chorioretinopathy (CSCR)

Central serous chorioretinopathy is when fluid builds up under the retina. This can distort vision. The fluid leakage comes from a layer of tissue under the retina, called the choroid.

Cystoid Macular Edema

Macular edema happens when fluid builds up in the macula, causing swelling. This can distort vision, making things look blurry and colors look washed out. 

Diabetic Retinopathy

People with diabetes can have an eye disease called diabetic retinopathy. This is when high blood sugar levels cause damage to blood vessels in the retina. These blood vessels can swell and leak.

Flashes and Floaters

Floaters look like small specks, dots, circles, lines or cobwebs in your field of vision. While they seem to be in front of your eye, they are floating inside. Floaters are tiny clumps of gel or cells inside the vitreous that fills your eye.

Ischemic Optic Neuropathy (AION)

Ischemic optic neuropathy (ION) is when blood does not flow properly to your eye’s optic nerve, eventually causing lasting damage to this nerve. With ION, you suddenly lose your vision in one or both of your eyes.

Macular Degeneration

With AMD you lose your central vision. You cannot see fine details, whether you are looking at something close or far. But your peripheral (side) vision will still be normal.

Macular Hole

Macular hole is when a tear or opening forms in your macula. As the hole forms, things in your central vision will look blurry, wavy or distorted. As the hole grows, a dark or blind spot appears in your central vision. A macular hole does not affect your peripheral (side) vision.

Macular Pucker

Macular pucker (also called epiretinal membrane) happens when wrinkles, creases or bulges form on your macula. The macula must lie flat against the back of your eye to work properly. When the macula wrinkles or bulges, your central vision is affected.

Macular Telangiectasia (PFT)

Macular telangiectasia (MacTel) is a disease affecting the macula, causing loss of central vision. MacTel develops when there are problems with the tiny blood vessels around the fovea. The fovea, in the center of the macula, gives us our sharpest central vision for activities like reading.

Ocular Melanoma

Ocular melanoma (melanoma in or around the eye) is a type of cancer that develops in the cells that produce pigment. Pigment gives color to your skin, hair and eyes. Just as you can develop melanoma on your skin, you can also develop it inside your eye or on your conjunctiva. Although it is the most common eye cancer in adults, ocular melanoma is very rare.

Plaquenil and your eyes

Plaquenil (Hydroxychloroquine sulfate) is a drug used to treat certain autoimmune diseases. This type of disease happens when the body's immune system attacks its own healthy tissue.

Posterior Vitreous Detachment

The middle of the eye is filled with a substance called vitreous. The vitreous is normally attached to the retina, in the back of the eye. A posterior vitreous detachment (PVD) is when the vitreous pulls away from the retina.

Retinal Tear and Detachment

A detached retina is when the retina lifts away from the back of the eye. The retina does not work when it is detached, making vision blurry. A detached retina is a serious problem. An ophthalmologist needs to check it out right away, or you could lose sight in that eye.

Retinal Vein Occlusion (BRVO and CRVO)

Arteries and veins carry blood throughout your body, including your eyes. The eye’s retina has one main artery and one main vein. When branches of the retinal vein become blocked, it is called branch retinal vein occlusion (BRVO).

Retinitis Pigmentosa (RP)

Retinitis pigmentosa (RP) is a group of eye problems that affect the retina. This condition changes how the retina responds to light, making it hard to see. People with RP lose their vision slowly over time. Usually, though, they will not become totally blind.

Retinal Artery Occlusion (BRAO and CRAO)

Most people know that high blood pressure and other heart diseases pose risks to your overall health. But many do not know that that high blood pressure can affect vision by damaging the arteries in the eye.

Subconjunctival Hemorrhage

Subconjunctival hemorrhage is when one or more blood spots appear on the white of your eye. The eye’s conjunctiva contains a lot of tiny blood vessels that can break. If they break, blood leaks between the conjunctiva and sclera. This bleeding is the bright red spot that you see on the white of your eye.

Uveitis

Uveitis occurs when the middle layer of the eyeball gets inflamed (red and swollen). This layer, called the uvea, has many blood vessels that nourish the eye. Uveitis can damage vital eye tissue, leading to permanent vision loss.

Colorado Center for the Blind

Founded in 1988 by the National Federation of the Blind of Colorado, the Colorado Center for the Blind is today a world-renowned blindness-skills training center located at the foot of the Rocky Mountains in Littleton, about 13 miles south of Denver.

Beyond Sight, Inc.

Beyond Sight is proudly owned and operated by Scott and Cami Chaplick. We thoroughly test and evaluate the adaptive technology products that are available on the market. In addition, we are beta or pre-release testers for most new products or versions hitting the market. If it's out there, we have probably heard about it, tested it, and carry it in our store if we thought the product was at a minimum satisfactory.

Audio Information Network of Colorado

AINC’s mission is to provide news and information in audio format for the blind, low vision and print disabled community of Colorado. Audio services empower individuals to be self-sufficient, connected to community, and continuously learning.

National Federation of the Blind of Colorado (NFBCO)

The National Federation of the Blind of Colorado (NFBCO) is a 501(c)(3) nonprofit made up of blind people of all ages, their families and friends. Our members and leaders provide advocacy and support to blind and visually impaired Coloradans across the state.  We work together to promote full participation and integration of blind people in all areas of life, and we serve as an advocate for change when equal access and treatment of the blind is denied. 

Colorado Blind and Low Vision Services

We provide specific services for people who are blind, visually impaired, or deaf-blind including one-on-one vocational rehabilitation counseling and guidance, training services (vocational, academic, personal, job-seeking, and on-the-job training), rehabilitation technology services, including assistive technology devices and assistive technology services, and rehabilitation engineering services to address barriers encountered with employment. Some of our specialized programs for the blind and visually impaired include Personal Adjustment Training, Business Enterprise Program, and independent living services for ages 55 and up.

American Council of the Blind (ACB)

You’re not alone in your journey through vision loss and blindness. American Council of the Blind (ACB) welcomes and accepts you. Guided by its members, ACB advocates for equality of people who are blind and visually impaired, inspires community, and connects you with education, resources, and each other to support your independence.

Center for Independence

CFI offers support groups, assistive devices and skills training for those with low vision and blindness. The on-site low vision lab in Grand Junction is available to consumers for demonstration and training on assistive devices. Our experienced professionals can help you to remain active, live independently and cope with vision loss.

Be My Eyes

Be My Eyes is a free app that connects blind and low-vision people with sighted volunteers and company representatives for visual assistance through a live video call.

Foundation Fighting Blindness

The Foundation Fighting Blindness was established in 1971 by a passionate group of families driven to find treatments and cures for inherited retinal diseases that were affecting their loved ones. At that time, little was known about these blinding retinal degenerative diseases. Very little research was being done, and there were no clinical trials for potential treatments.

National Organization for Rare Disorders (NORD)

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Ocular Melanoma Foundation (OMF)

The Ocular Melanoma Foundation (OMF) is a resource for eye cancer research funding and patient/caregiver support. OMF has raised over $2 million in its quest to #SEEACURE for eye cancer.  

American Diabetes Association

The moving force behind the work of the American Diabetes Association is a network of more than 565,000 volunteers, their families and caregivers, a professional society of nearly 20,000 health care professionals, as well as more than 250 staff members.

The Genetic and Rare Diseases Information Center (GARD)

The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

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