Albinism Fellowship UK & Ireland

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Albinism Fellowship UK & Ireland

Providing information, advice and support for people with Albinism and their families. Please note: We are not a casting or modelling agency.

Albinism Fellowship is a positive and sociable volunteer-run organisation that aims to provide information, advice and support for people with albinism and their families. We also provide information about the condition to professionals working with people with albinism, and other appropriate interested parties.

07/10/2026

Visual fields sounds like one of those super dry tests , but actually it says a lot about how we see. The tricky bit for people with albinism is that nystagmus makes it hard to keep your eyes absolutely still on that tiny dot. So you end up doing this whole head tilt balancing act, and if the dot’s invisible to you, the whole thing feels pretty absurd. We laugh about it now, but yeah sometimes it’s frustrating when a test doesn’t fit your eyes.

06/10/2026

Becky has albinism, and at 15 she has such wise words to share.

Sometimes the most powerful things are said simply. Her words are a reminder for all of us to stop for a moment, really listen, and think about how we think about ourselves and other people.

There’s so much wisdom here for someone so young — and I think it’s something we could all take on board.

05/10/2026

We have two exciting events coming up this week.

Adults with Albinism call - Tuesday 6 October, 8-9pm on Zoom.

Belfast Family Event at W5 - Saturday 10 October, 10am - 1pm

Get your tickets at https://www.albinism.org.uk/events

04/10/2026

When I drop something, it isn’t a quick bend and grab. It’s, where did you go, little thing? In this video, Dr. Jay tries my world with the Kristina Vision Pro on and drops his wedding ring. It doesn’t just appear. He has to really hunt. And with plenty of determination, he finally finds it. It’s a funny watch, sure, but it also gives a clear sense of how something small becomes a whole mission without clear vision.

03/10/2026

Making a cup of tea when you have albinism and a visual impairment isn’t particularly difficult — I just might do it a little differently to someone with typical vision. Speaking for myself, obviously!

I put my head at frankly ridiculous angles to work out when the cup is full, occasionally get a little overenthusiastic with the milk, and rest the spout of the kettle against the side of the mug when I pour.

Sugar? Somehow gets everywhere. Every time.

And one thing you absolutely cannot fool me about is the kettle. I can tell just by the sound of the water pouring if it wasn’t hot enough.

So yes, I make tea slightly differently. But the important bit is that I make a perfectly decent cuppa.

Usually.

02/10/2026

So sometimes people say to me, hey, do you know your eyes are moving? Yes, that’s called nystagmus, a common part of albinism that develops when we’re babies. Even though my eyes move, I don’t see the room wobbling about normally, because my brain’s doing its own clever editing. Occasionally, if I’m very tired or stressed, I can get that wobble feeling. It’s called oscillopsia. But Mostly, it’s other people noticing it, not me. And if my eyes move around more when I’m tired or emotional, that’s just how it behaves. And, interestingly, if I’m stretching the truth, sometimes people say my eyes give me away by getting a bit more wiggly. I mean, I wouldn’t rely on it as a lie detector, but it’s a funny quirk.

01/10/2026

Having a child with a visual impairment can feel overwhelming at times. There’s so much to learn, and when you don’t know what the road ahead looks like—or have other parents beside you who truly understand—it can feel like you’re finding your way alone.

Jo, mum to two amazing daughters with albinism, has walked that road. Here she shares some of the wisdom, reassurance and hope she’s gathered along the way—for the parents just beginning their own journey. 🤍

29/09/2026

ASK THE DOCTOR – FREE ONLINE EVENT - PLEASE SHARE.

Are you a parent or carer of a child aged 16 or under with albinism?

Join us for a special online Ask the Doctor session with Dr Jay Self and Dr Helena Lee, giving families the opportunity to ask questions about albinism and vision.

📅 Tuesday 24 November
⏰ 6pm
💻 Online via Microsoft Teams
🎟️ FREE

When you register, you can submit a question you’d like our doctors to answer during the session.

Whether there’s something you’ve always wanted to understand about your child’s vision, eye care or how albinism affects sight, this is your chance to hear directly from doctors with specialist knowledge of albinism.

Places are free, but registration is required.

Hosted by the Albinism Fellowship UK & Ireland

27/09/2026

If you have nystagmus, you might know exactly what I mean by the occasional wobbly head!

Sometimes I can feel my head moving and I’m really aware I’m doing it — but I can’t just stop it. Other times, I have absolutely no idea I’m doing it until somebody points it out. It can feel strange and sometimes make you a bit self-conscious.

So I asked Dr Jay: why do people with nystagmus sometimes move their heads like this?

Could it be our head trying to compensate for what our eyes are doing? The answer is… we’re not completely sure.

But head movements can happen alongside nystagmus, including in people with albinism. So if you have a bit of a wobbly head from time to time too, you’re certainly not the only one.

26/09/2026

It blows my mind how much people with typical vision can see. I genuinely can’t comprehend it — I have no concept of what that amount of visual information must be like.

People can try to replicate what it’s like to have a visual impairment, to get some sense of what we can’t see. But we can’t do the same thing in reverse. We can’t experience, even for a moment, what it’s like to see everything they can.

If I suddenly woke up tomorrow with perfect vision, I honestly don’t think I’d know what to do with it.

Imagine suddenly being able to see a world you never knew was there.

Address

London

Telephone

+447946457979

Website

http://www.albinism.org.uk/

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