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
We are not able to produce detailed medical information about all eye 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
- Bardet-Biedl Syndrome UK
- Batten disease – Batten Disease Family Association
- Behcets UK
- Birdshot Uveitis Society
- Blepharospasm – Dystonia UK
- Cerebral Visual Impairment (CVI) – The Cerebral Visual Impairment Society, CVI Scotland
- Dominant Optic Atrophy - Dominant Optic Atrophy: for patients - Gene Vision
- Ehlers-Danos Syndrome - Ehlers-Danos Support UK
- Enucleation - National Artificial Eye Service, Changing Faces, Microphthalmia, Anophthalmia and Coloboma Support (MACS), OcuMel UK, Childhood Eye Cancer Trust (CHECT)
- Friedreich’s ataxia - Ataxia UK, NHS information on ataxia
- Idiopathic intracranial hypertension (IIH) – IIH UK, The Brain Charity
- Leber's Hereditary Optic Neuropathy (LHON) Society
- Marfan syndrome – Marfan Trust
- Microphthalmia, Anophthalmia and Coloboma Support (MACS)
- Neurofibromatosis - Nerve Tumours UK
- Ocular melanoma - OcuMel UK
- Ocular mucous membrane pemphigoid (OMMP) – PEM Friends
- Ocular myasthenia – Myaware
- Posterior cortical atrophy (PCA) – Rare dementia support
- Pseudoxanthoma Elasticum (PXE) Support Group (PiXiE)
- Punctate inner choroidopathy - Macular Society
- Refsum disease/syndrome - National Organisation for Rare Disorders (NORD), Retina UK
- Retinoblastoma - Childhood Eye Cancer Trust (CHECT)
- Retinopathy of prematurity (ROP) - Bliss (for babies born premature or sick), Royal College of Paedatrics and Child Health (RCPCH) Screening for Retinopathy of prematurity (PDF), Royal College of Ophthalmologists (RCOPHTH) Information for Parents and Guardian - Treatment of ROP (PDF)
- Sarcoidosis - SarcoidosisUK
- Sickle cell retinopathy – Sickle Cell Society
- Stickler Syndrome UK
- Toxoplasmosis of the eye - Tommy’s information on toxoplasmosis and pregnancy
- Vasculitis – Vasculitis UK
Please email [email protected] 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
Page last reviewed: Sept. 1, 2022
Next review due: Jan. 31, 2023