Rare eye conditions
The eye is a complex part of the body and as a result there are many different conditions that have an impact on sight. Thousands of people each year are diagnosed with the most common eye conditions. However a small number of people have rarer eye conditions.
Links to other organisations
Unfortunately we are not able to produce detailed medical information about these rarer conditions. Instead, we have developed a directory of charities and support groups who are specialists in helping people who have specific conditions.
Disclaimer: inclusion in this list is not intended as an endorsement and we are not responsible for the accessibility of these external sites.
- Albinism - Albinism Fellowship
- Alstrom Syndrome UK
- Behcets Syndrome Society
- Birdshot Uveitis Society
- Dystonia Society
- Ehlers - Danos Syndrome - Ehlers - Danos Support Group
- Laurence - Moon - Bardet - Biedl Society
- Marfan Syndrome - Marfan Association UK
- Monocular vision - OneVision. You can also download our monocular vision factsheet (Word, 233 KB) for more information and answers to some frequently asked questions.
- Micro and Anophthalmia Childrens Society
- Neurofibromatosis Association UK
- Pseudoxanthoma Elasticum (PXE) Support Group (PiXiE)
- Punctate Inner Choroidopathy - PIC Society
- SILA - the Sarcoidosis Charity
- Stickler Syndrome Support Group
- Retinoblastoma - the Childhood Eye Cancer Trust (CHECT)
- Toxoplasmosis of the eye - NHS information on the symptoms of ocular toxoplasmosis, Tommy's info on toxoplasmosis and pregnancy
Please email email@example.com if you know of other organisations that should be added to this list.
Please note that it is our policy not to link to informal support groups.
Help and support
The RNIB Helpline deals with all aspects of adapting to sight loss no matter what eye condition you have. If you have practical or emotional worries or want to find out about products or your rights, we can help. Call our Helpline on 0303 123 9999 or email firstname.lastname@example.org.
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