The people who already worked it out.
Which sunscreen holds up in the heat. How to get a desk moved away from a window. What to say to a nurse who has never treated albinism before. None of that is in a leaflet.
Join
The UVSafe WhatsApp community
On the app you already have, on the phone you already own, using data you have already paid for. No account, no password, no forum to remember to visit.
Talk to a person
Peer volunteers
People with albinism who have agreed to answer questions from people who are earlier in it than they are. Not clinicians, and they will tell you when something needs a doctor rather than guessing.
Ask them about sunscreen that works in heat, getting a school to make an adjustment, what a screening appointment is actually like, or how to talk to family about a new diagnosis.
House rules
A group where people talk about their health needs looking after.
What is shared here stays here
No screenshots, no forwarding, no naming people outside the group.
Nobody gives medical advice
Share what happened to you. Do not tell someone else what to take.
Person-first language
Persons with albinism. The word “albino” is not used here.
No selling
Product experiences are welcome. Sales pitches are not.
Under 18s join with a parent
A young person can be in the group with a parent or guardian who is also in it.