Seventeen people were at our get togethers last weekend to celebrate Rare Disease Day, in London and Cambridge. They came to meet fellow aniridia patients and relatives to chat about all aspect of aniridia.

Andy hosted the Cambridge event in the Waterstones cafe. Andy and two of his 3 young children have aniridia too. He’s also the Treasurer of Aniridia Network. Anastasia and Kyriakos brough young Zinovia who has aniridia. Plus the retired ophthalmologist Tony Moore joined the group as he plans to get more involved with Aniridia Network.

Volunteers James and Glen who both have aniridia ran the London meet up in the lively World Food Court of Stratford Westfield shopping centre. Attending were mum and daughter Helen and Anastasia-Maria who both have familial aniridia. 3 year old Dhruvin has WAGR 11p deletion syndrome. Later 71 year old John arrived too.

I am so happy finally to meet all of you! You are a great community..

Helen

While enjoyhing lunch they and discussions about aniridia all stages of life: development milestones, school, job and retirement. We showed all off our visual aids, including monoculars, eyesheilds and magnifiers.

These are all so amazing!

Anastasia-Maria

What is a meet up? Why come?

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

“Honestly, I was surprised at how much I did enjoy myself. I really loved hearing about other’s experiences, finding out what they did and how they got there.
It was also interesting and almost strange (in the best way) to hear a lot of my own day-to-day struggles mirrored in others. Having people understand these difficulties; on a level that even the most empathetic non-visually impaired person just can’t.”

Read more about our past brilliant meet ups

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