Plans for Aniridia Day 21 June 2019

For this year’s Aniridia Day, we want you to focus on possibilities to:

  1. improve understanding of aniridia and social inclusion
  2. support people (with children) with aniridia
  3. raise funds for the European Aniridia Conference 2020 in the UK
  4. empower national aniridia associations

Check what your local aniridia association is planning but here are the basic ideas.

#CanDoWithAniridia

 

Woman rock climbing
What Jessica #CanDoWithAniridia

On social media share a photo/video with an explanation that shows what can be done as a job, hobby, sport or education – while living with aniridia.

Tag your Twitter/Instagram/Facebook posts with: #CanDoWithAniridia and @AniridiaDay
On Facebook: join and post in the public Aniridia Day group.

Like, comment on and share what others post too.

Highlight the posts to researchers, medical organisations, celebrities, sports people etc. and ask them to share the posts with their followers

Events

Group photo of three adults and three children holding Aniridia Day postersGathering with others living with aniridia is lots of fun. Take the initiative: pick a time and place and advertise it for people to come to together talk with each other.

You can also organise a stall or presentation or other activities to educate people about aniridia in: schools, libraries, hospitals or other public places.

Ideally, these should happen on Aniridia Day but other dates are good too.

Remember to post a picture on social media about what you did too, tagging @AniridiaDay

Fundraising

The 5th European Aniridia Conference is planned to be in London on 14-16 August 2020.

It will bring together the world’s top aniridia doctors and researchers to improve treatments. The benefits will be felt by all patients worldwide, through the impact of clinical guidelines, scientific articles, and research projects.

Aniridia Network urgently needs £40,000 to make it possible Please do something to help reach that target such as running a cake stall or make a donation. Profits and donations can be paid in to the European Aniridia Conference 2020 fund.

Cake stallperson in stocks having wet sponges thrown at them

Aniridia associations can also make appeals or organise activities to raise funds for their own purposes. One idea is to collect artwork by children with aniridia and sell them online.

Volunteer

There are many possible ways to give practical help to your local aniridia organisation or Aniridia Europe. Think about the skills you currently have or would like to develop that would be useful and contact them to offer your time.

Aniridia groups prepare

If you run an aniridia association or social media group, please translate and adapt these instructions and share with as many people as you can to encourage them to participate in Aniridia Day 2019.

Organise any other activities that you want as well. Tell us about your plans so we can share them here too.

Whatever you do, do it in style: order clothing and other merchandise with the Aniridia Day logo from our brand new online shop. All sales raise money for science on aniridia.

Baseball cap with Aniridia Day logo on white with black peak and sidesT-shirt with aniridia logo, white with navy sleaves and collarMessenger bag with Aniridia Day logo

Here’s a video about the day

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Meet-ups 2018

Informal gatherings took place to celebrate Aniridia Day 2018. They brought together people affected by  aniridia to share experiences, stories and useful information.

 

Krasnodar – 21 June

Member of the Interregional Support Centre for patients with Aniridia “ Iris” met in a cafe in Russia.

Bashkortostan – 21 June

Also in Russia, families met to talk and celebrate in a park.

London – 20 June

Glen and James, Eileen, Chris, Eleanor. Keith and Matt met at London Victoria station for drinks and dinner. They also broadcast live on the internet to wish the world happy Nystagmus and Aniridia Day .

Cardiff – 17 June

Emily, who has aniridia along with her son, hosted a meet up on Sunday for people in South Wales. Four people with aniridia plus siblings and parents met to chat about medical experiences and day to day support over tea and pizza. They are planning to have another get together soon.

 

Activities at hospital in Spain

The Spanish aniridia association had an information desk between 10am and 1.30pm on Aniridia Day in the hospital where they have their office. The aim was to share leaflets and brochures about what aniridia, the day and their organisation. At the end they wrote hashtags on balloons with some other messages before releasing them in to the air.

Watch this 30 second montage of the day on Twitter 

Meet up in Greece

Greeks Theoni and her son Markus who has aniridia, met another family affected by aniridia in a cafe to celebrate Aniridia Day. Russians Galina, her son Ramy and daughter Liza, who has aniridia flew in to meet them on the evening of 21 June 2017.

Theoni said:

We couldn’t hope for a better way to celebrate for Aniridia Greece on this special ANIRIDIA DAY !!!!!!!!! THANK YOU so much for this wonderful meeting !!!!! We have so much in common like if we knew each other for years !!!!!

Galina who is a member of the Board of Directors and Secretary of Aniridia Europe said:

The kids had a lot of fun. We discussed some points about Aniridia Greece starting as a independent organisation. We also talked also about mission and role of Aniridia Day in the future for people with aniridia in Greece.

Two women on a couch with two children sitting on their knees, all wearing sunglasses
Galina, Liza, Theoni, Markus