Understanding eye conditions
Every child’s vision impairment is unique to them, there are a breadth of conditions and circumstances that can cause sight loss and within that varying effects on what useful vision an individual may have. Learning more about your child’s specific condition can help you know what to expect and prepare to support them.
We are pleased to partner with ABDO and RNIB in order to share their knowledge. Both websites have lists of a range of eye conditions to give you more information and advice.
What do we see?
Thomas Pocklington Trust has created two simulated videos to help increase understanding of how the world looks to blind and partially sighted adults and young people. You can watch these as one continuous video or by selecting a condition or conditions that is most relevant to you.
Eye condition specific organisations
It’s a really good idea to connect with the organisation formed specifically to support your child’s eye condition. We’ve put together a list of contacts so that you can get in touch.
Albinism Fellowship
Read our information on Albinism >
Tel: 01282 771900
Email: support@albinism.org.uk
www.albinism.org.uk
Alstrom Syndrome UK
Tel: 07517 278 946
Email: info@alstrom.org.uk
www.alstrom.org.uk
Aniridia Network UK
Tel: 07792 867 949
Email: info@aniridia.org.uk
www.aniridia.org.uk
Bardet-Biedl Syndrome UK
Tel: 07591 206680
Email: info@bbsuk.org.uk
www.bbsuk.org.uk
Birdshot Uveitis Society (BUS)
Email: info@birdshot.org.uk
birdshot.org.uk
Charles Bonnet Syndrome
Email: esmesumbrella@gmail.com
www.charlesbonnetsyndrome.uk
CHECT (Childhood Eye Cancer Trust)
Email: info@chect.org.uk
chect.org.uk
Coates’ Disease – Violet’s Glow
CVI Society
Diabetic Retinopathy
Tel: 0345 123 2399
Email: helpline@diabetes.org.uk
www.diabetes.org.uk
International Glaucoma Association
Tel: 01233 648 170
Email: info@iga.org.uk
www.glaucoma-association.com
Keratoconus Group
Email: anne@keratoconus-group.org.uk
www.keratoconus-group.org.uk
Lebers Hereditary Optic Neuropathy
Macular Society
Tel: 0300 3030 111
Email: help@macularsociety.org
www.macularsociety.org
Microphthalmia, Anophthalmia and Coloboma Support
Tel: 0800 169 8088 & 0800 644 6017
Email: enquiries@macs.org.uk
www.macs.org.uk
National Artificial Eye Service
Tel: 01253 951131
Email: naes.naesinfo@nhs.net
www.naes.nhs.uk
Nystagmus Network
Tel: 01427 718 093
Email: info@nystagmusnet.org
www.nystagmusnetwork.org
Retina UK
Tel: 0300 111 4000
Email: info@RetinaUK.org.uk
www.retinauk.org.uk
Stargardt’s Connected
Read our information on Stargardt’s >
Email: stargardts183@gmail.com
www.stargardtsconnected.org.uk
Stickler Syndrome UK
Tel: 01903 785771
Email: info@stickler.org.uk
stickler.org.uk
Usher Syndrome
Email:info@usherkidsuk.com
www.usherkidsuk.com
Uveitis
Tel: 0845 075 8114
Email: info@oliviasvision.org
www.oliviasvision.org
Wolfram Syndrome
Tel: 01903 211358
Email: admin@wolframsyndrome.co.uk
www.wolframsyndrome.co.uk
Add your details
If your school or college is not yet included on our list please get in touch at online@victa.org.uk and we will be happy to add you to our resources.
