We held two great friendly gatherings to celebrate Rare Disease Day 2025 with patients and their relatives.

The first was online on Friday evening. 11 peole joined in. For up to 2 hours they discussed their personal stories about living with the condition, as well as it’s genetic aspects, and related treatments such as the RAFT research trial at Moorfields Eye Hospital. They shared thougths on managing symptoms like dry eye and keratopathy, and the emotional and practical challenges of vision loss.

The second event was at Starbucks at Euston Station on Saturday afternoon. 9 people came for a coffee and chat on similar subjects for a few hours.

It was really nice to talk, meet new people and reunite with those who have not come recently.

Simon who madet he arrangements said:

I really enjoyed the conversation and the opportunity to discuss and share experiences with other members of Aniridia Network. It was really good that a large number of people joined the meeting. I think meet-ups like this will help to build a community and support network for people that have aniridia and related eye conditions and their families.

I would definitely be interested in helping to facilitate future online/in-person meet-ups for Aniridia Network. I think hosting such events will grant an opportunity for members to come together and build friendships and support networks.

If you would like to host a meet up in your area email meetup@aniridia.org.uk!

Rare Disease Day

We host events around this time of year to mark Rare Disease Day. It’s an international celebration held annually on the 28 February (29th on rare occasions!)

It’s aim is to work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building a community that is multi-disease, global, and diverse– but united in purpose.

Find out more and get involved in supporting Rare Disease Day