SightAtlasUK
A free UK resource

Everything you need,
in one place.

Clear, accessible information for people living with sight conditions — and the people who support them.

May 2026 · Reviewed monthly

Something not quite right?

💛 Why this site exists

When my daughter was diagnosed with Stargardts, I had so many questions. I couldn't find anywhere that had everything in one place.

Find your condition

Search 17 eye conditions — get research, practical guides, benefits help & support

Type your condition then tap Search (or press Enter)

Just diagnosed?

Start here.

You don't need to figure everything out today. Here are five things that actually matter in the first weeks.

Recent Updates May 2026
Research

Stargardt: SpliceBio's dual-vector ABCA4 gene therapy (SB-007) has treated its first patient in the ASTRA Phase 1/2 trial at Oxford. AAVantgarde Bio's CELESTE trial is also recruiting adults with ABCA4 mutations.

Research

Retinitis Pigmentosa: MeiraGTx RPGR gene therapy Phase 2/3 trial reports significant preservation of visual field in X-linked RP patients at 12-month follow-up.

Research

Usher Syndrome: ProQR's antisense oligonucleotide therapy for USH2A (QR-421a) shows continued visual function preservation at 24 months in ongoing trial.

Benefits

PIP & DLA rates updated May 2026 (3.8% rise): Daily Living enhanced rate £114.60/week. Mobility enhanced rate £80.00/week. Attendance Allowance higher rate £114.60/week. Carer's Allowance £86.45/week.

Technology

All conditions: Apple iOS 18 introduced significant VoiceOver improvements including enhanced image descriptions and improved braille display support.

Updates are verified and added each month. Information is for guidance only — always discuss research and treatment options with your ophthalmologist.

Daily Life

Everyday Guide

Practical tips to make daily life easier — covering the things that matter beyond the clinic. Tap any topic to expand it.

You are not alone. Every tip here comes from the community — people with sight conditions who have found what works. If you have something to add, .
Organisation

A place for everything

Keep everything in consistent, predictable locations. Use tactile markers (rubber bands, bump dots, or textured tape) on dials, appliances, and containers. If something moves, announce it to household members.

Safety

Hob and oven safety

  • Induction hobs are significantly safer — the surface doesn't heat directly
  • Use oven gloves that extend to the elbow
  • Long-handled silicone tools keep hands away from heat
  • A talking thermometer removes guesswork on meat temperatures
  • Consider a slow cooker for safer, hands-off cooking
Gadgets

Helpful kitchen technology

  • Talking scales and measuring jugs — available from RNIB Shop and Amazon from around £15
  • Talking microwave — fully voiced controls, available via RNIB Shop
  • Liquid level indicator — clips to a cup and beeps when liquid reaches the top, around £8
  • Large print or braille labels — for tins, packets, and bottles
  • Bump dots — adhesive tactile dots to mark key settings on any dial or remote, around £6
Technique

Chopping and preparation

Use a contrasting chopping board — light board for dark foods, dark board for light. A non-slip mat under the board prevents sliding. Keep fingers in the 'claw' grip when cutting. An apple slicer or egg slicer removes the need for knife skills for many common tasks.

Support

RNIB and rehab support

A Vision Rehabilitation Specialist (VRS) can visit your home and give personalised kitchen training — completely free. Ask your ophthalmologist or local authority sensory team for a referral. rnib.org.uk ↗

Newborns

Caring for a baby

  • Use a consistent changing station — always in the same place, everything within reach
  • Wrist rattles on babies help you locate and track them by sound
  • Bright, contrasting clothing on young babies helps with any remaining vision
  • A baby monitor with a vibrating receiver means you don't need to rely on hearing or sight alone
  • Sling-style baby carriers keep the baby close and in contact — very effective for blind and partially sighted parents
Day to day

Routines and structure

Consistent routines are a gift to both parent and child — everyone knows what comes next. Colour-coded belongings (child's bag always this colour, coat always on this hook) create system and independence for the child too.

Schools

School and activities

Let the school know about your sight loss and ask for printed communications also by email. For trips and events, don't hesitate to ask another parent to guide you — most people are delighted to help when asked directly.

Emotional

You are a good parent

Sight loss does not determine the quality of your parenting. Research consistently shows that children of disabled parents develop exceptional empathy, independence, and resilience. RNIB has a dedicated parents' community and information at rnib.org.uk ↗. Look Up UK also provides peer support specifically for parents with sight loss.

Support

Practical help available

Local authorities can provide a carer or support worker to assist with childcare tasks if needed — request a social care assessment. This is separate from any benefits you claim. Sense ↗ and RNIB both have family support services.

Running

Guide running

Guide running (running with a sighted guide connected by a tether or holding a rope) is one of the most popular sports for people with sight loss. UK Athletics ↗ has a guide runner network. The Blind Veterans UK and British Blind Sport can also match you with a local guide runner.

Para Sport

Classified para sports

  • Goalball — a team sport designed specifically for people with visual impairment. All players wear blackout masks. Hugely sociable and competitive. British Blind Sport ↗
  • Tandem cycling — cycling on a tandem bicycle with a sighted pilot. Active communities across the UK
  • Blind football — 5-a-side with a ball containing a bell
  • Showdown — a table-top sport similar to table tennis for visually impaired players
  • Visually impaired skiing — guided skiing is accessible across many UK and European resorts
Gym

Using a gym with sight loss

Ask the gym for an induction specifically focused on your needs — under the Equality Act they must provide this. Request a consistent machine layout and ask staff to guide you initially. Most gym equipment is accessible by touch once you know where it is.

At home

Home exercise

Audio-described yoga and fitness classes are increasingly available. Yoga with Adriene on YouTube is highly accessible by audio alone. Many blind and partially sighted people find swimming excellent — lanes provide natural guidance and lifeguards are trained to assist.

Organisation

British Blind Sport

The national organisation for sport for people with sight loss. Find local clubs, events, and activity programmes at britishblindsport.org.uk ↗.

Getting started

Organise your products

Use tactile labelling (bump dots, rubber bands, braille labels, or different-shaped containers) to distinguish products by touch. Group products in a consistent order — left to right or by product type — and return everything to exactly the same place every time.

Foundation

Foundation and base

  • Tinted moisturiser or BB cream is more forgiving than foundation for blending without full sight
  • A beauty blender or sponge blends more evenly than a brush and is easier to control
  • Applying with fingertips and blending outward in consistent strokes works very well
  • A lighted magnifying mirror maximises any remaining vision
Eyes

Eye makeup

  • Pencil eyeliner is easier to control than liquid
  • Use your fingertip to feel the lash line, then apply liner along the upper lid only — less precision needed
  • A lash comb separates mascara — run it through from root to tip using touch to guide
  • Eyeshadow sticks are much easier than palettes and brushes — blend with fingertips
  • Guide dots (tiny raised stickers at the corners of the eye) can help with liner application
YouTube

Watch and learn

Several blind and partially sighted beauty YouTubers share detailed audio-described tutorials. Molly Burke and Lucy Edwards both cover makeup with low vision in accessible, practical videos worth searching for.

Grooming

Shaving and grooming

Electric shavers are significantly safer than wet razors. Consistent routines in a consistent order make grooming confident and independent. A tactile mirror (handheld with tactile border) helps orient any remaining vision.

Free · Best first

RNIB Talking Books — free

RNIB's Talking Books service is completely free for anyone with a sight condition and offers over 25,000 titles available for download or by post. This is specifically designed for people with sight loss and should be the first service you sign up for. Sign up at rnib.org.uk ↗

Free

Calibre Audio Library — free

Calibre is a free lending library of audiobooks — no sight certificate required, just a love of books. Over 14,000 titles available. calibreaudio.org.uk ↗

Free

Libby / OverDrive — free with library card

Download the free Libby app, connect your local library card, and access thousands of audiobooks and ebooks for free. Most UK councils are members. libbyapp.com ↗

Free

BBC Sounds & podcasts

BBC Sounds is fully accessible via VoiceOver and TalkBack and includes radio programmes, audiobooks, and thousands of podcasts — entirely free. Podcasts on all subjects are a fantastic alternative to reading for people with sight loss.

Paid

Audible — the best-known paid service

Audible (Amazon) has the largest library of commercial audiobooks and is fully accessible. It costs around £7.99/month with one credit per month, or individual titles can be purchased. A free trial is available. Note: RNIB Talking Books and Calibre cover a wide library for free — consider those first before subscribing. audible.co.uk ↗

Hardware

Listening devices

  • Victor Reader Stream — a dedicated DAISY audiobook player, very accessible, used by many RNIB members
  • Amazon Echo / Alexa — can play Audible books by voice command, no screen needed
  • Bluetooth headphones — wireless headphones with long battery life remove the need to manage cables
Rail

Passenger Assist (trains)

Passenger Assist is a free service allowing you to book assistance at train stations across the UK. You can book by phone or via the Passenger Assist app. Staff will meet you at the station, guide you to your platform, and ensure you board safely. Book at least 2 hours in advance where possible. nationalrail.co.uk ↗

Bus

Buses and local transport

All modern UK buses announce stops via audio — if your local bus doesn't, report it to the bus operator. Ask the driver to let you know when your stop is coming. The TfL Taxi Card (London) and local authority taxi schemes provide subsidised taxis for disabled people — check with your council.

Apps

Navigation apps

  • Soundscape (Microsoft) — free iOS app that uses 3D audio to describe your surroundings, landmarks, and junctions as you walk
  • Be My Eyes — free app connecting you to a sighted volunteer via video call for real-time visual assistance anywhere
  • Google Maps — turn-by-turn navigation works excellently with VoiceOver and TalkBack
  • Seeing AI — reads signs, menus, and text in real time using your phone camera
Training

Orientation and mobility training

Free specialist training to help you travel safely and independently is available via your local authority rehabilitation service. This includes long cane training and route learning. Ask your ophthalmologist or council sensory team for a referral. Guide Dogs UK also provides free travel training. guidedogs.org.uk ↗

Holidays

Accessible travel and holidays

Always notify airlines and hotels of your sight loss when booking — assistance is free and legally required. Disability Holidays Guide and Enabled Holidays specialise in accessible UK and international breaks. ABTA members are required to provide assistance on request.

Your rights

Equality Act 2010

Your employer is legally required to make reasonable adjustments for your sight loss. These can include screen magnification software, adjusted lighting, modified duties, remote working, or additional support. Refusing to make reasonable adjustments is unlawful disability discrimination.

Funding

Access to Work — up to £69,260/year

Access to Work is a government grant that pays for equipment and support you need to do your job that your employer cannot reasonably fund. This covers screen readers (JAWS, ZoomText), magnifiers, support workers, and taxi fares to work. Apply at gov.uk/access-to-work ↗ — before buying anything privately.

Technology

Essential workplace technology

  • JAWS or NVDA — screen readers that read all on-screen content aloud (Access to Work funded)
  • ZoomText — screen magnification with text-to-speech
  • Dragon NaturallySpeaking — dictation software replacing the need for typing
  • Large print keyboard — high contrast keys for partially sighted users
  • Braille display — connects to any computer for silent braille output
Support

RNIB Employment Services

RNIB's employment team provides free, confidential advice on disclosure, adjustments, redundancy, and career development. Call 0303 123 9999 or visit rnib.org.uk ↗.

Self-employment

Running your own business

Access to Work covers self-employed people too. Enterprise Nation and the Prince's Trust both support disabled entrepreneurs. Many people with sight loss find self-employment offers the flexibility and control that employment sometimes can't.

Important

You are allowed to feel however you feel

Diagnosis with a sight condition — or progressive vision loss — involves real grief. Anger, denial, sadness, and fear are all completely normal. There is no right way to feel and no timeline. Acknowledging those feelings, rather than pushing them down, is the starting point.

Free counselling

RNIB Sight Loss Counselling

RNIB provides free talking therapy sessions with counsellors who specialise in sight loss. This is different from general counselling — these therapists understand the specific emotional landscape. Call 0303 123 9999 to be referred. rnib.org.uk ↗

Crisis

If you need to talk now

Samaritans: 116 123 — free, 24 hours a day, 7 days a week.
Crisis Text Line: Text SHOUT to 85258.
MIND: 0300 123 3393.

Community

Peer support

Connecting with others who understand your experience is consistently described as one of the most powerful things people do after diagnosis. Every specialist charity listed on this site has peer support groups — online and in person. You do not have to work through this alone.

Carers

Support for family members and carers

Carers UK (carersuk.org) provides free support specifically for people caring for someone with a disability. Carers are entitled to their own needs assessment from the local authority. Carer's Allowance is £86.45/week (May 2026) if you provide 35+ hours of care per week.

Something missing? This guide grows based on what people tell us they need.
Get in touch

Contact Us

Have a question, spotted a mistake, or want to suggest something? We'd love to hear from you. We aim to reply within 5 working days.

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Other ways to get help

RNIB Helpline: 0303 123 9999

Macular Society: 0300 3030 111

Glaucoma UK: 01233 648170

Retina UK: 0300 111 4000

Legal

Privacy Policy

Last updated:

Plain English summary: Sight Atlas does not sell your data. We do not collect personal information unless you choose to contact us. We do not use advertising trackers.

👤 Who we are

Sight Atlas is a free, independent UK resource for people living with partial sight and sight loss. Contact us via the .

📋 What information we collect

We collect the minimum needed:

  • Contact form submissions: Name, email, and message — used only to reply to you.
  • Accessibility preferences: Stored in your browser's local storage only. Never leaves your device.
  • Feedback votes: Stored locally in your browser only.

🍪 Cookies

No advertising or tracking cookies. We use browser local storage for accessibility preferences only — stored on your device, not transmitted to us. We do not use Google Analytics or any third-party tracking.

🔗 Third-party links

Links to RNIB, Macular Society, Glaucoma UK, NHS and others are subject to those sites' privacy policies. We load fonts from Google Fonts — see Google's Privacy Policy.

⚖️ Legal basis (UK GDPR)

Contact form processing is based on legitimate interests — responding to enquiries. We do not process special category data.

🗂️ Data retention

Contact form correspondence is retained for up to 12 months then deleted.

🔒 Your rights

Access, correction, deletion, and objection — use our . Complaints to ICO: ico.org.uk or 0303 123 1113.

Legal

Accessibility Statement

Last updated:

Our commitment: Sight Atlas exists to serve people living with sight loss. Accessibility is not an afterthought — it is the core purpose of this website.

Conformance status

We aim to meet WCAG 2.1 Level AA. We believe this website is substantially conformant.

What we have built in

  • Text size controls ✓ Built in
  • High contrast mode ✓ Built in
  • Skip to main content ✓ Built in
  • Keyboard navigation ✓ Built in
  • Screen reader support ✓ Built in
  • Minimum 44×44px tap targets ✓ Built in
  • Colour contrast AA ✓ Passes
  • Accessible contact form ✓ Built in

Reporting issues

Use our . We aim to respond within 5 working days.

Enforcement

EASS: equalityadvisoryservice.com · 0808 800 0082

Reference

Glossary

Medical terms explained in plain English. These are the words you will hear most often at eye clinics and in research articles.

Tip: Use your browser's find function (Ctrl+F on desktop) to search for a specific term. New to eye conditions? See our

A

Acuity (Visual Acuity) — A measure of how clearly you can see detail. Expressed as a fraction, e.g. 6/6 is normal vision, 6/60 means you see at 6 metres what a normally sighted person sees at 60 metres.

AMD (Age-related Macular Degeneration) — See Macular Degeneration.

Ang-2 (Angiopoietin-2) — A protein involved in blood vessel growth. Targeted by newer treatments for wet AMD and diabetic macular oedema alongside VEGF.

AON (Antisense Oligonucleotide) — A type of therapy that uses short strands of genetic material to correct faulty gene instructions. Being investigated for conditions including Usher syndrome.

AREDS2 — A large clinical trial that identified a specific combination of vitamins and minerals (lutein, zeaxanthin, vitamins C and E, and zinc) that slows progression of intermediate AMD.

Autosomal Recessive — An inheritance pattern where a child must inherit a faulty gene from both parents to develop the condition. Neither parent may be affected themselves.

Autosomal Dominant — An inheritance pattern where inheriting just one copy of a faulty gene is enough to cause the condition.

B

Biallelic — Having mutations in both copies of a gene (one inherited from each parent). Required for eligibility for some gene therapies including Luxturna.

Braille — A tactile reading and writing system using raised dots. Refreshable braille displays connect to phones and computers to translate on-screen text into braille in real time.

C

Cones — Photoreceptor cells in the retina responsible for colour vision and fine detail in normal lighting. Concentrated in the macula. Absent or non-functional in achromatopsia.

CRISPR — A gene editing technology that can precisely cut and modify DNA. Being investigated for conditions including LCA caused by CEP290 mutations.

CVI (Cerebral Visual Impairment) — Visual impairment caused by damage to the visual processing areas of the brain rather than the eyes themselves.

CVI (Certificate of Visual Impairment) — A certificate issued by your ophthalmologist confirming your level of visual impairment. Enables registration with your local authority and unlocks benefits and support.

CGM (Continuous Glucose Monitor) — A wearable device that tracks blood sugar levels continuously. Relevant to diabetic retinopathy as good blood sugar control slows disease progression.

D

DAISY — Digital Accessible Information System. An audio format designed for people with print disabilities. RNIB Talking Books uses DAISY format.

Drusen — Small yellow deposits of protein and fat that accumulate under the retina. A hallmark of dry AMD. Large drusen indicate higher risk of progression.

E

EHC Plan (Education, Health and Care Plan) — A legally binding document issued by a local authority setting out the educational, health, and social care support a child with special needs is entitled to.

ERG (Electroretinography) — A test that measures the electrical activity of the retina in response to light. Used to diagnose and monitor conditions including RP, LCA, achromatopsia, and cone dystrophy.

F

Fluorescein Angiography — A test where dye is injected into the arm and photographs are taken as it passes through the blood vessels of the retina. Used to detect leaking or abnormal vessels in wet AMD and diabetic retinopathy.

Fovea — The tiny central area of the macula responsible for the sharpest, most detailed vision. Damaged in macular conditions. Underdeveloped (hypoplastic) in albinism.

Foveal Hypoplasia — Underdevelopment of the fovea. A defining feature of albinism and a key diagnostic marker visible on OCT scanning.

G

Gene Therapy — A treatment that delivers a corrected or replacement gene directly into cells, typically using a viral vector. Luxturna is the first approved gene therapy for an inherited retinal condition.

Geographic Atrophy — Advanced dry AMD where areas of retinal pigment epithelium have died, creating expanding blind spots. The first treatment (pegcetacoplan) was approved in 2024.

Glaucoma — A group of conditions causing progressive optic nerve damage, usually associated with raised eye pressure. The second most common cause of blindness in the UK.

H

HbA1c — A blood test measuring average blood sugar levels over approximately three months. A key indicator of diabetes control. Every 1% reduction in HbA1c reduces diabetic retinopathy progression risk by 37%.

hESC-RPE — Human embryonic stem cell-derived retinal pigment epithelium. Cells grown in a laboratory from stem cells and transplanted to replace damaged RPE in conditions like Stargardt disease and AMD.

I

IOP (Intraocular Pressure) — The pressure inside the eye. Elevated IOP is the main risk factor for glaucoma, though glaucoma can occur with normal IOP too.

Inherited Retinal Disease (IRD) — A group of genetic conditions causing progressive retinal degeneration, including RP, Stargardt disease, LCA, cone dystrophy, and others.

L

Lipofuscin — A toxic waste product that accumulates in the retinal pigment epithelium in Stargardt disease, gradually poisoning the cells. The target of visual cycle modulators such as emixustat.

Low Vision — Visual impairment that cannot be fully corrected by glasses, contact lenses, or surgery. Most people with low vision have some usable sight.

Luxturna — The brand name for voretigene neparvovec, the first gene therapy approved for an inherited retinal condition. Available on the NHS for patients with biallelic RPE65 mutations causing LCA or RP.

M

Macula — The central area of the retina responsible for sharp, detailed, and colour vision. Damaged in AMD, Stargardt disease, cone dystrophy, and diabetic macular oedema.

Macular Oedema — Swelling of the macula caused by leaking blood vessels. A complication of diabetic retinopathy and wet AMD. Treated with anti-VEGF injections.

Melanin — The pigment that gives colour to skin, hair, and eyes and helps protect against UV damage. Absent or reduced in albinism.

N

NICE — National Institute for Health and Care Excellence. The body that approves treatments for NHS use in England. A NICE approval means a treatment must be made available on the NHS.

Nystagmus — Involuntary, repetitive eye movements that reduce visual acuity. Associated with albinism, achromatopsia, LCA, and other conditions.

O

OCT (Optical Coherence Tomography) — A non-invasive scan that produces detailed cross-sectional images of the retina. The most important diagnostic and monitoring tool in modern eye care.

Ophthalmologist — A medical doctor specialising in eye conditions and surgery. Distinct from an optometrist (who performs eye tests) and an optician (who dispenses glasses).

Optogenetics — A technique that uses light-sensitive proteins to restore some light sensitivity to surviving retinal cells that have lost their natural photoreceptors.

P

Photophobia — Abnormal sensitivity to light. A prominent feature of achromatopsia, albinism, and cone dystrophy.

Photoreceptors — Light-sensitive cells in the retina. Rods detect light and dark and peripheral vision. Cones detect colour and fine detail.

PIP (Personal Independence Payment) — A UK disability benefit with two components — Daily Living and Mobility. Available to people aged 16–66 with a long-term health condition or disability.

Q

QTVI (Qualified Teacher of Visual Impairment) — A specialist teacher trained to support children with visual impairment in educational settings. Local authorities are required to provide QTVI support for children with a visual impairment.

R

Retina — The light-sensitive layer at the back of the eye that converts light into electrical signals sent to the brain via the optic nerve.

RPE (Retinal Pigment Epithelium) — A layer of cells behind the photoreceptors that supports and nourishes them. Damaged in Stargardt disease, AMD, and other macular conditions.

Rods — Photoreceptor cells responsible for vision in low light and peripheral vision. The first cells affected in retinitis pigmentosa.

S

Scotopic Vision — Vision in dim or dark conditions, primarily using rod photoreceptors. Normal in achromatopsia (which affects cones only). Impaired early in retinitis pigmentosa.

Stem Cells — Cells that can develop into many different cell types. Stem cell therapies aim to replace lost retinal cells in conditions like Stargardt disease and AMD.

Subretinal Injection — An injection delivered beneath the retina, used to administer gene therapies such as Luxturna directly to the photoreceptor cells.

T

Tonometry — Measurement of the pressure inside the eye (IOP). A standard part of glaucoma assessment. The familiar "puff of air" test at an optician is a form of tonometry.

TalkBack — Google's built-in screen reader for Android devices. Reads all on-screen content aloud.

V

VEGF (Vascular Endothelial Growth Factor) — A protein that stimulates abnormal blood vessel growth in wet AMD and diabetic retinopathy. Anti-VEGF injections (Eylea, Lucentis, Vabysmo) block this protein.

Visual Field — The full area you can see without moving your eyes, including peripheral vision. Progressively lost in glaucoma and retinitis pigmentosa.

VoiceOver — Apple's built-in screen reader for iPhone, iPad, and Mac. Reads all on-screen content aloud and supports braille displays.

VRS (Vision Rehabilitation Specialist) — A specialist who provides practical training and support to help people with sight loss live independently. Free via local authority referral.

X

X-Linked — An inheritance pattern where the gene mutation is carried on the X chromosome. X-linked conditions typically affect males more severely than females.

Be Prepared

Questions to Ask
Your Doctor

Eye clinic appointments can feel overwhelming. Having questions written down beforehand means you leave with the information you actually need. These are the questions worth asking.

Tip: Take someone with you if you can — a second pair of ears remembers things you might miss. Ask if you can record the consultation on your phone.

At your first appointment

  • What is my exact diagnosis?
  • What does this mean for my vision in the short term and long term?
  • Is this condition hereditary? Should my family members be tested?
  • Should I have genetic testing? How do I access it on the NHS?
  • Are there any clinical trials I might be eligible for?
  • What is the name of the specialist clinic I should be referred to?
  • How often should I have follow-up appointments?
  • Is there anything I should avoid doing that could affect my vision?
  • Can you issue me a Certificate of Visual Impairment (CVI)?
  • Can you refer me to a low vision clinic?

About your treatment

  • What treatments are currently available for my condition?
  • Are there any new treatments being developed that I should know about?
  • What does the treatment involve and how often will I need it?
  • What are the side effects or risks?
  • What happens if I choose not to have treatment?
  • Are there any supplements I should or shouldn't be taking?
  • Is there anything I can do to slow progression?

About your daily life

  • Am I still safe to drive? Do I need to inform the DVLA?
  • Can you refer me to a Vision Rehabilitation Specialist?
  • What assistive technology would help me?
  • What benefits and support am I entitled to?
  • Are there any support groups or charities you recommend?
  • Can I get a written summary of today's appointment?

For parents of children with a sight condition

  • What should the school know and how do we tell them?
  • Should my child see a specialist paediatric ophthalmologist?
  • How do we apply for an Education, Health and Care (EHC) plan?
  • How will my child's vision change as they grow?
  • What activities should my child avoid, if any?
  • Are there any other children or families we could connect with?
  • What DLA or other financial support is my child entitled to?

About clinical trials

  • Is there a trial currently recruiting for my condition?
  • Am I genetically eligible for any current trials?
  • What would participation involve?
  • Would travel costs be covered?
  • Where can I find out about new trials as they open?
Remember: You are entitled to ask any of these questions. A good ophthalmologist will welcome them. If you feel rushed, ask for a longer appointment or a follow-up call with a specialist nurse.
In Your Area

Find Local Support

Local support groups, rehabilitation services, and sight loss organisations near you. Finding people who understand what you're going through makes an enormous difference.

🔍 RNIB Local Support Finder

RNIB's support finder lets you search by postcode for local sight loss groups, rehabilitation services, and specialist support in your area.

Find support near you at rnib.org.uk ↗

This link goes to RNIB's website. If the link has moved, go to rnib.org.uk and search "find support near you".

🛒 RNIB Shop — Specialist Equipment

The RNIB Shop is the UK's leading retailer of specialist equipment for people with sight loss — talking clocks, liquid level indicators, large print items, bump dots, magnifiers, kitchen aids, and much more.

Everything is tried and tested by people with sight loss. If you need specialist daily living equipment, this is the place to start.

Visit the RNIB Shop ↗

🎓 Henshaws Knowledge Village — Free Tech Training

Free video guides teaching people with sight loss how to use technology — iPhones, Android phones, screen readers, and accessibility features — in plain, practical language. The best free tech training resource in the UK for people with sight loss.

Visit Henshaws Knowledge Village ↗

📞 National Helplines

RNIB: 0303 123 9999 — Monday to Friday, specialist advisors for all sight conditions.

Macular Society: 0300 3030 111 — specialist nurse advisors for macular conditions.

Glaucoma UK: 01233 648170 — free helpline for glaucoma questions.

Retina UK: 0300 111 4000 — support for inherited retinal conditions.

Sense (Deafblind): 0300 330 9256 — support for people with combined sight and hearing loss.

🏥 NHS Rehabilitation Services

Every local authority in England is required to provide sight loss rehabilitation services. These are free and include:

  • Vision Rehabilitation Specialists (home visits)
  • Long cane and mobility training
  • Kitchen and daily living skills training
  • Low vision assessments
  • Technology and assistive equipment advice

Ask your ophthalmologist for a referral, or contact your local council's sensory impairment team directly.

👁️ Low Vision Clinics

Free NHS low vision clinics provide magnifiers, tinted lenses, and specialist equipment tailored to your vision. Available via referral from your ophthalmologist or GP. Ask specifically for a "low vision assessment" — many people don't know they are entitled to one.

💛 Sight Loss Counselling

Being diagnosed with a sight condition — or supporting someone who has — takes a real emotional toll. Specialist sight loss counsellors understand the specific grief and challenges involved in a way that general counsellors may not.

RNIB Sight Loss Counselling — Free sessions with counsellors who specialise in sight loss. Call 0303 123 9999 to be referred.

Macular Society Counselling — Free telephone counselling for people with macular conditions and their families. Call 0300 3030 111.

Find an accredited counsellor near you — The British Association for Counselling and Psychotherapy (BACP) directory lets you search for accredited counsellors by location. Filter by "visual impairment" or "disability" to find specialists.

Search the BACP counsellor directory ↗

Samaritans — 116 123 — free, 24 hours a day, 7 days a week. Always there if you need to talk.

Understanding Your Eyes

Eye Health Basics

Before the medical terms make sense, it helps to understand how the eye works. This page explains the basics — clearly and without jargon.

👁️ How the Eye Works

The eye works like a camera. Light enters through the cornea (the clear front surface), passes through the lens, and is focused onto the retina at the back of the eye. The retina converts light into electrical signals that travel along the optic nerve to the brain, where they are interpreted as images.

The quality of what you see depends on every part of this system working correctly. Most eye conditions affect either the retina, the optic nerve, or the lens.

🔴 The Retina

The retina is a thin layer of light-sensitive tissue at the back of the eye. It contains two types of photoreceptor cells:

  • Rods — responsible for vision in low light and peripheral (side) vision. There are about 120 million rods in each eye. Rods are the first cells affected in retinitis pigmentosa.
  • Cones — responsible for colour vision and fine detail in good lighting. Concentrated in the macula. Absent or non-functional in achromatopsia. Progressively lost in cone dystrophy and Stargardt disease.

🎯 The Macula

The macula is the small central area of the retina — about 5mm across — responsible for your sharpest, most detailed vision. It is what you use for reading, recognising faces, watching television, and seeing colour. The very centre of the macula is called the fovea.

Conditions that damage the macula — AMD, Stargardt disease, cone dystrophy, diabetic macular oedema — affect central vision while usually preserving peripheral vision. This is why people with macular conditions often say they can see around something but not directly at it.

🧠 The Optic Nerve

The optic nerve carries electrical signals from the retina to the brain. It contains approximately 1.2 million nerve fibres. Glaucoma damages the optic nerve — usually through elevated eye pressure — causing gradual, irreversible loss of peripheral vision. Optic neuritis is inflammation of the optic nerve, often associated with multiple sclerosis.

💧 The Vitreous and Aqueous

The eye contains two fluids. The aqueous humour fills the front of the eye and is constantly produced and drained — imbalance in this system causes raised eye pressure (IOP) in glaucoma. The vitreous humour is the clear gel that fills the main body of the eye. As we age, the vitreous can shrink and pull away from the retina, causing floaters and flashing lights.

📊 Understanding Your Vision Test Results

Visual Acuity — measured as a fraction. 6/6 is normal. 6/60 means you see at 6 metres what someone with normal vision sees at 60 metres. The legal driving standard is 6/12. Partial sight registration is typically 6/60 or worse in the better eye.

Visual Field — the full area you can see without moving your eyes, including peripheral vision. Measured on a perimeter machine. Results shown as a map — darker areas indicate reduced sensitivity or blind spots.

IOP (Intraocular Pressure) — normal range is approximately 10–21 mmHg. Raised IOP increases glaucoma risk. Measured by a puff of air or a small probe touching the anaesthetised eye.

OCT (Optical Coherence Tomography) — a detailed cross-sectional scan of the retina showing its layers and thickness. The most important diagnostic tool in modern eye care. Non-invasive and takes about 5 minutes.

🏥 Types of Eye Specialist

Optometrist — performs eye tests, prescribes glasses and contact lenses, and screens for eye conditions. Available at high street opticians. NHS eye tests are free for many groups.

Ophthalmologist — a medical doctor specialising in eye conditions and surgery. Works in hospitals and specialist clinics. Diagnoses and treats eye disease.

Orthoptist — specialises in eye movement disorders, nystagmus, and children's vision.

Low Vision Specialist — provides magnifiers, tinted lenses, and practical strategies to maximise remaining vision. Available via NHS referral.

Vision Rehabilitation Specialist (VRS) — visits your home and provides practical training for daily living with sight loss. Free via your local authority.

Want to understand a specific term? Visit our
Work

Employment &
Sight Loss

Your rights, the support available, and how to thrive professionally with a sight condition. This page is also for employers who want to support a colleague or employee.

Key number: RNIB Employment Line — 0303 123 9999 — free, confidential advice on all employment matters.

⚖️ Your Legal Rights

The Equality Act 2010 protects you from discrimination at work because of your sight condition. Your employer must make reasonable adjustments to remove disadvantages you face because of your condition. Refusing to make reasonable adjustments is unlawful disability discrimination.

Reasonable adjustments can include: screen magnification software, adjusted lighting, modified duties, remote working, flexible hours, a dedicated support worker, or changes to your workstation.

The duty applies from the point of application — you do not have to be employed before requesting adjustments.

💷 Access to Work — Up to £69,260/year

Access to Work is a government grant that pays for equipment and support you need at work that your employer cannot reasonably fund. It is one of the most valuable and underused benefits available to people with sight loss.

Access to Work can fund:

  • Screen readers (JAWS, NVDA) and magnification software (ZoomText)
  • Braille displays and specialist keyboards
  • A support worker or job coach
  • Taxi fares to work if you cannot use public transport
  • Adaptations to equipment
  • Mental health support at work

Apply before buying anything privately. Access to Work cannot reimburse purchases made before the application. Apply at gov.uk/access-to-work ↗

Access to Work also covers self-employed people.

💻 Essential Workplace Technology

JAWS — the most widely used professional screen reader for Windows. Reads all on-screen content aloud. Around £900 but usually funded via Access to Work.

NVDA — a free, open-source screen reader for Windows. Excellent alternative to JAWS for many users.

ZoomText — screen magnification with text-to-speech. Particularly useful for partially sighted people who are not yet using a full screen reader.

Dragon NaturallySpeaking — voice dictation software replacing or reducing the need for typing.

Large print keyboard — high contrast keys significantly help partially sighted users.

OrCam MyEye — clips to glasses and reads documents, screens, and faces aloud. Useful in meetings and for reading printed materials.

Need training on workplace technology? Henshaws Knowledge Village ↗ provides free video guides on using accessibility technology — including screen readers and phone accessibility — specifically for people with sight loss.

🗣️ Telling Your Employer

You are not legally required to disclose a sight condition to your employer, but doing so enables you to request reasonable adjustments. Consider disclosing when:

  • Your condition is affecting your ability to do your job
  • You need adjustments to your workstation or equipment
  • You are applying for a role and need adjustments at interview
  • Your condition is likely to become apparent to colleagues

RNIB's Employment Line (0303 123 9999) provides free confidential advice on how to approach disclosure conversations and what to request.

📋 Redundancy and Dismissal

If you are made redundant or dismissed and believe your sight condition was a factor, this may be disability discrimination. Contact:

  • ACAS: 0300 123 1100 — free employment advice
  • RNIB Employment Line: 0303 123 9999
  • Citizens Advice: citizensadvice.org.uk
  • Equality Advisory Support Service: 0808 800 0082

Employment tribunal claims must be brought within 3 months of the act complained of — act quickly.

🏢 Guidance for Employers

If you employ or manage someone with a sight condition, here is what you need to know:

  • You have a legal duty to make reasonable adjustments — this is not optional
  • Access to Work pays for most specialist equipment — the cost to you is usually minimal
  • Ask the person what they need — do not assume
  • A workplace needs assessment (available free via Access to Work) identifies specific requirements
  • RNIB offers free employer guidance at rnib.org.uk
  • Sight loss does not affect intelligence, commitment, or capability

💼 Self-Employment

Many people with sight conditions find self-employment offers flexibility and control that employment cannot always provide. Access to Work covers self-employed people. The Prince's Trust and Enterprise Nation both support disabled entrepreneurs. HMRC's Access to Work scheme can also fund a personal assistant for business tasks.

For Parents

When Your Child
Has a Sight Condition

Finding out your child has a sight condition is one of the hardest things a parent can face. This page is for you — practical, honest, and written with the understanding that you are doing an extraordinary job.

You are not alone. Thousands of families in the UK are living full, rich, happy lives with a child who has a sight condition. This is the beginning of a journey, not the end of one.

💛 First — How You Are Feeling

Shock. Fear. Grief. Guilt. Anger. These are all completely normal responses to a diagnosis. You may feel all of them at once, or in waves over weeks and months. There is no right way to feel and no timeline for feeling better.

What parents consistently say, looking back, is that the fear of the diagnosis was worse than the reality of living with it. Children are extraordinarily adaptable. They do not mourn the vision they have never had — they grow up knowing their world, mastering it, and thriving in it.

Give yourself permission to feel whatever you feel. And when you are ready, the practical steps below are here.

📋 The First Steps

  • Get a genetic diagnosis — where relevant, knowing the specific gene mutation determines treatment eligibility. Free on the NHS — ask for a referral to a paediatric inherited retinal disease clinic.
  • Ask for a CVI — the Certificate of Visual Impairment is free and issued by your ophthalmologist. It unlocks local authority support, DLA, and educational provision.
  • Contact RNIB — call 0303 123 9999. Tell them your child's diagnosis. They have specialist advisors for families of children with sight conditions.
  • Request a QTVI — a Qualified Teacher of Visual Impairment is entitled to work with your child from the earliest age. Contact your local authority's sensory support service.
  • Apply for DLA — Disability Living Allowance for children under 16 can be worth over £600/month. RNIB can help with the form — it is complex but you are entitled to it.
  • Connect with other families — this is consistently described as the single most helpful thing parents do. Every specialist charity listed on this site has a family community.

🏫 Education

Your child is entitled to an Education, Health and Care (EHC) Plan — a legally binding document that sets out the specialist support your child must receive at school. This can fund a QTVI, specialist technology, braille resources, large print materials, and a teaching assistant.

Request an EHC needs assessment from your local authority as early as possible — ideally before your child starts school. The process takes up to 20 weeks.

At school, your child is entitled to:

  • Regular visits from a QTVI
  • Large print or braille materials
  • Preferential seating
  • A tablet or laptop for close-up work
  • Extra time in exams
  • Adjusted lighting where needed
  • A reader or scribe if required

If the school does not know about your child's condition, tell them in writing and follow up. Ask for a meeting with the SENCo (Special Educational Needs Coordinator) at the start of every school year.

💰 Financial Support

Disability Living Allowance (DLA) — for children under 16. Both Care and Mobility components may apply. Can be worth £600+ per month at higher rates. This is one of the most important financial supports available — do not delay applying.

Carer's Allowance — if you spend 35+ hours per week caring for your child, you may be entitled to £86.45/week (April 2026 rate).

Carer's Credit — protects your National Insurance record if you are not working due to caring responsibilities.

Council Tax reduction — available once your child has a CVI.

Call RNIB (0303 123 9999) for free help with all benefit applications. Do not try to navigate the forms alone — applications made with support succeed far more often.

🌱 Your Child's Future

Children with sight conditions go to university, have careers, travel independently, play sport, fall in love, and live full and extraordinary lives. The technology available today — and the gene therapies in development — make the outlook for many conditions better than it has ever been.

The most important things you can give your child are high expectations, the right practical support, and the confidence that their sight condition is part of who they are — not a limit on what they can become.

Your instinct to seek information, to advocate, and to understand — the instinct that brought you to this page — is already making a difference.

💛 Support for You

Parents of children with sight conditions experience real stress, grief, and exhaustion. Your wellbeing matters too.

  • RNIB Sight Loss Counselling — free sessions for parents as well as people with sight conditions. Call 0303 123 9999.
  • Carers UK — free support specifically for carers. carersuk.org
  • Parent carer forums — local networks of parents of disabled children, run by and for parents. Find yours at nnpcf.org.uk
  • Retina UK family weekends — residential events for families affected by inherited retinal conditions. retinauk.org.uk

📞 Key Contacts for Families

RNIB: 0303 123 9999

Retina UK: 0300 111 4000

Sense (deaf-blind): 0300 330 9256

NDCS (deaf children): 0808 800 8880

Contact (families of disabled children): 0808 808 3555

DLA helpline: 0800 121 4600

Practical help

Help & Support

Last updated:

In a crisis right now

Registering as Sight Impaired (CVI walkthrough)

A Certificate of Vision Impairment (CVI) is the gateway to most UK sight-loss support. You cannot self-refer — only a consultant ophthalmologist can issue one.

  1. Ask your eye consultant at your next hospital appointment whether your vision meets the CVI criteria. If it does, they complete the form (BP1 in Scotland, CVI in England/Wales, A655 in Northern Ireland).
  2. Two categories:
    • Sight Impaired (SI / partially sighted) — visual acuity 3/60 to 6/60, or up to 6/24 with reduced field.
    • Severely Sight Impaired (SSI / blind) — visual acuity below 3/60, or below 6/60 with very contracted field.
  3. The hospital sends a copy to you, your GP, and your local council Adult Social Care team.
  4. Your council contacts you within ~28 days to add you to the Sight Impaired Register and offer a Vision Rehabilitation Assessment.

What registration unlocks (May 2026 figures)

Accessible Information Standard letter (NHS legal right)

Since 2016, the NHS Accessible Information Standard requires all NHS and adult social care services to ask you how you want information sent — large print, braille, email, audio, or BSL — and to record it on your patient record. Most patients don't know this. Use the form below to generate a letter to your GP and hospital.

PIP descriptor wording for sight loss

The Personal Independence Payment form (PIP2) is famously hard. These are example phrases written from a sight-loss perspective for the most common descriptors. Use them as a starting point — be honest about your own experience.

Activity 1 — Preparing food

"I cannot identify use-by dates, oven dials or knife blades safely. I have burned myself on the hob twice this year. I rely on my partner to chop ingredients and to check raw chicken is cooked. On bad-light days I cannot prepare a hot meal at all."

Activity 4 — Washing and bathing

"I cannot tell shampoo from conditioner without an iPhone label, and I cannot judge water temperature reliably. I have slipped in the shower because I cannot see soap on the floor."

Activity 8 — Reading and understanding signs, symbols and words

"Standard print is unreadable. I need 24pt or larger and I still cannot read it for more than 5 minutes without eye strain and headache. I cannot read price tags, medication labels, bus numbers or street signs."

Activity 11 — Planning and following journeys

"I cannot follow the route of an unfamiliar journey. I cannot read station signs, bus numbers or platform indicators. I have boarded the wrong bus and got lost. I require another person to accompany me on any unfamiliar journey because of overwhelming psychological distress and the risk of harm."

Tip: Use the phrase "reliably, safely, repeatedly and in a reasonable time" in every answer — this is the legal test the assessor must apply.

Sighted-help apps (all free)

UK helplines & charities

Transparency

How We Write
Our Content

Last updated:

Important: Sight Atlas provides information for guidance only. It is not a substitute for professional medical advice. Always discuss your condition, treatment options, and any research with your own ophthalmologist or specialist.

📋 Who writes the content

Sight Atlas was created by a parent of a child with Stargardt disease. Content is researched and written by the Sight Atlas team using the sources listed below. We are not medical professionals.

We aim to have condition pages reviewed by a qualified clinical professional. If you are a specialist nurse, ophthalmologist, or optometrist willing to review content, please .

📚 Sources we use

All condition information is drawn from the following trusted sources:

  • NHS England — nhs.uk — clinical guidelines and treatment information
  • NICE (National Institute for Health and Care Excellence) — nice.org.uk — approved treatments and technology appraisals
  • RNIB (Royal National Institute of Blind People) — rnib.org.uk
  • Macular Society — macularsociety.org
  • Retina UK — retinauk.org.uk
  • Glaucoma UK — glaucoma.uk
  • Moorfields Eye Hospital NHS Foundation Trust — moorfields.nhs.uk
  • Foundation Fighting Blindness — fightingblindness.org
  • ClinicalTrials.gov — clinicaltrials.gov — trial registry
  • NIHR (National Institute for Health and Care Research) — nihr.ac.uk
  • Peer-reviewed published research — including journals such as Ophthalmology, JAMA Ophthalmology, and The Lancet

🔄 How often content is reviewed

All content is reviewed monthly — in the first week of every month. The date of the most recent review is shown on every condition page and in the site footer.

Research and clinical trial information changes rapidly in some conditions. We do our best to keep this current but strongly recommend checking directly with specialist charities and your clinical team for the most up-to-date trial information.

⚠️ Medical disclaimer

The information on Sight Atlas is provided for general information and guidance only. It does not constitute medical advice and should not be used as a substitute for professional medical advice, diagnosis, or treatment.

Always seek the advice of your ophthalmologist, GP, or other qualified health provider with any questions you may have regarding your condition or its treatment. Never disregard professional medical advice or delay seeking it because of something you have read on this website.

Sight Atlas is not responsible for the content of external websites linked from this site.

💷 Benefits information

Benefit rates on this site are updated quarterly following the annual April uprating. They are provided for guidance only. Benefit rules and rates change — always verify current rates and eligibility at gov.uk ↗ or by calling the relevant benefit helpline.

✉️ Errors and corrections

We take accuracy seriously. If you believe any information on this site is incorrect or out of date, please and we will investigate and correct it promptly.

Video Resources

Henshaws Knowledge Village — Featured Resource

Free video training specifically for people with sight loss — how to use an iPhone if you can't see the screen, Android accessibility, screen readers, and practical technology skills. The best free tech training resource in the UK for people with sight loss.

Visit Henshaws Knowledge Village ↗

Helpful YouTube Channels

Note: External links. Sight Atlas is not responsible for their content. Always discuss medical information with your ophthalmologist.
Eye Clinic Support

Find Your ECLO

An Eye Clinic Liaison Officer (ECLO) is a specialist support worker based in hospital eye clinics. They are one of the most useful — and least known — resources available to people with sight loss. Their help is free.

What does an ECLO do?

An ECLO bridges the gap between your clinical appointment and your life outside the clinic. They can:

  • Explain your diagnosis in plain language after your appointment
  • Help you understand what support and benefits you are entitled to
  • Refer you to rehabilitation services, social care, and local support groups
  • Help you fill in CVI paperwork and benefits forms
  • Connect you with counselling and emotional support
  • Advise on assistive technology and practical daily living aids

🔍 Find your ECLO

ECLOs are employed by hospital eye departments or charities such as RNIB, Macular Society, and Glaucoma UK. The best way to find yours:

  1. Ask at your eye clinic — ask the receptionist or your ophthalmologist whether there is an ECLO at your hospital. Many clinics don't advertise them prominently.
  2. Contact RNIB — call 0303 123 9999. RNIB funds ECLOs in many UK hospitals and can tell you whether yours has one.
  3. Macular Society ECLO search — if you have a macular condition, the Macular Society funds dedicated ECLOs at many UK hospitals.

Understanding the role of an ECLO (Macular Society) ↗

RNIB living with sight loss ↗

💡 If your clinic doesn't have an ECLO

Not every hospital has an ECLO — particularly smaller or more rural units. If yours doesn't:

  • Ask your ophthalmologist to refer you to one at a larger nearby centre
  • Contact your local sight loss charity — many provide similar one-to-one support
  • RNIB's helpline (0303 123 9999) provides telephone ECLO-style support
  • The Macular Society's helpline (0300 3030 111) has specialist nurse advisors

👁️ What to ask your ECLO

  • What does my diagnosis mean in practical terms day to day?
  • What benefits and financial support am I entitled to?
  • How do I get my Certificate of Visual Impairment (CVI)?
  • Can you refer me to a Vision Rehabilitation Specialist?
  • Are there support groups for my condition in this area?
  • What assistive technology would help me most?
  • Are there any clinical trials I might be eligible for?
Newly diagnosed? Requesting an ECLO appointment is one of the first five steps we recommend — see our .
Research

Clinical Trials Finder

UK clinical trials currently recruiting or recently active for inherited and acquired eye conditions. Select your condition to see what's available.

Always discuss trials with your ophthalmologist before registering interest. Eligibility depends on your specific genetic mutation, disease stage, and other factors.

🔍 Search all UK eye trials

NIHR's Be Part of Research covers all UK clinical trials. Search by your specific condition for the most current recruitment status.

Search NIHR Be Part of Research ↗

🧬 Genetic testing for trial eligibility

Many trials require a confirmed genetic diagnosis. NHS genetic testing for inherited eye conditions is free — ask your ophthalmologist for a referral to an Inherited Retinal Disease clinic. Your specific mutation determines which trials you can access.

Financial Support

Benefits Calculator

Answer a few questions to find out which UK benefits and financial support you or your child may be entitled to. Rates are May 2026 figures.

Important: This tool gives guidance only. Always apply with support from RNIB (0303 123 9999) or Citizens Advice — applications made with help succeed far more often.

Who is this for?