18 members came to one of 4 meet ups around England to celebrate international Rare Disease Day 2024. They got to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. As always it was a wonderful atmosphere and really interesting conversations. It was also a leap year so we could do one on the rare extra day in February too.

London: Thursday 29 February

Debbie, Kathy, Mary, Dan, Andrew, John and Keith came or a drink with James in a Wetherspoons and who all have aniridia.

Birmingham: Saturday 2 March

Katie and Simon chatted for 2.5 hours over lunch in a coffee shop.

Reading: Saturday 2 March

New mum Helen came with her baby with aniridia. She had a quiet chat with Rachel who has aniridia as well as her young twin boys alongside downs syndrome.

I can’t explain in words how valuable I have found speaking with other families with aniridia so thank you both for making this possible for us.

Helen

Cambridge: Sunday 3 March

Mum Anastasia, Annie (with WAGR) and her dad joined Andy the Treasurer of Aniridia Network for lunch in Waterstones. Two of his 3 young children have aniridia like him. All enjoyed talking about use of canes, dry eye, artificial irises, school/college and support (EHCPs).

It was lovely meeting up, can’t wait do it again.

Annie

If you couldn’t get to these events, our next conference is planned to be online on 27 July 2024. We may also have events around Aniridia Day on 21 June. Save the dates.

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 28th 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 an community that is multi-disease, global, and diverse– but united in purpose.

Find out more and get involved in supporting Rare Disease Day

Meet ups are informal and informative

You may be sceptical or nervous about coming to a meet up. Tiereny wasn’t sure about our last event. Afterwards she said:

This was my first meet up and I definitely look forward to going to my next one. It was great to meet some really cool people and get to know them”.

Tiereny

It was good to chat to others there. It’s always encouraging to hear of others experiences and challenges  and how they make adaptions to cope with aniridia. Sometimes its just the simplest of things like not noticing people waving at you or finding people in a large place which affect us the most, but its good to chat over these things. It was also good to hear about how those with aniridia are still able to live full lives, both in and outside of work.

Johnathan