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Tag Archives: rare disease
Having aniridia in Gibraltar
Eloise was the first person born in Gibraltar with aniridia – which given the sunny weather there must be a challenge! She is part of the committee of the Gibraltar Society for the Visually Impaired (GSVI) When yonger, Eloise got … Continue reading
Posted in Patients' tales
Tagged Eloise Durante, gibraltar, podcast, rare disease, rare disease day
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Rare Disease Day 2024
300 million people worldwide are living with a rare disease, including 3.5 million (1.6%) in the UK. There are over 7,000 rare diseases, one of these being aniridia. February 29 is Rare Disease Day, a time to raise awareness and … Continue reading
Aniridia Map
People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country? It’s impossible to have exact figures, but the Disease Maps website is a useful way to … Continue reading
Hannah’s rare story
Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day. I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common. What makes me … Continue reading
Take a (No) #IrisSelfie to raise awareness and funds for aniridia
We want to raise awareness of aniridia, help those who are visually impaired because of it, and support treatment research. So we want you to post a photo of your eye, WITH or WITHOUT an iris on Twitter / Facebook / … Continue reading
Posted in Campaigns, Fundraising, Patients' tales
Tagged fundraising, IrisSelfie, rare disease, rare disease day
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Personal recordings for Rare Disease Day
To celebrate Rare Disease Day we encouraged people to each answer 5 questions about their rare condition and how they feel about it: Which rare disease do you/your family member/friend have? How does it affect you and/or them? Have you met other … Continue reading
A parent’s experience of our befriending scheme
To mark Rare Disease Day 2013 we have a story of just how incredibly helpful it is to bring people affected by a rare disease together. A parent contacted our befriending scheme last November. She has two children, the youngest being … Continue reading
Prepare for Rare Disease Day: Wednesday 29 February 2012
Rare but strong together A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare. But collectively people who have rare conditions are not … Continue reading
Posted in Campaigns, Fundraising, Other agencies
Tagged fundraising, rare disease, rare disease day
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Aniridia Network 