Albinism Fellowship UK & Ireland

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.

26/06/2026
25/06/2026

Surviving this weather is hard enough for anyone… but add horrendous light sensitivity, headaches, barely being able to see, and having no natural protection from the sun, and it’s a whole new level! ☀️🥵

Everyone knows their own skin, but I get about 10 minutes’ grace before I start to burn. Aggrrr! 😩

Right now, my happy place is a cool, dark room with the shutters firmly closed. Anyone else counting down until the temperature drops?
altruistsun




24/06/2026

As a volunteer-led charity, we sometimes struggle to fund all the work we want to do for the albinism community. Our vision is a welcoming space where everyone belongs. We recently received an anonymous donation that left us speechless with gratitude! On behalf of all of us, thank you. If you’d like to donate or support my upcoming tandem ride, the sponsorship link is in the bio




24/06/2026

On Saturday , I was out on the streets of Dublin with Jay, as he steps into my world.

Jay is a kids eye surgeon He is wearing my AlbiVision Pro glasses—what I call my “Kristina Vision Pros -AKA my unique vision”—so he can understand what it’s like to live with albinism.

Through his eyes, we see the world as a place of blurred shapes, overwhelming brightness, and deep sensitivity to light. Jay shares what he sees, how he feels, and the challenges he faces— I thought this would especially appropriate on this scorching day in London, where it’s 38 degrees. I hope this gives you a glimpse of what living with photophobia truly means.





23/06/2026

Getting your genetics tested can be fun for some, but for others, it’s crucial. When you have a rare condition, testing helps researchers continue their vital work. In the case of albinism, it’s especially important to rule out syndromic forms like HPS. We touched on this at the Dublin event on Saturday!

Don’t forget, our adults with Albinism Zoom call is tomorrow at 8pm. You can still book your place by following the link...
22/06/2026

Don’t forget, our adults with Albinism Zoom call is tomorrow at 8pm. You can still book your place by following the link in the first comment. Look forward to seeing you there.

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