Tag Archives: rare disease day

Professors’ Bremond Gignac and Rama message for Rare Disease Day 2019

To mark Rare Disease Day on 28 February 2019, two of the top specialists in Europe, made a commitment to keep researching aniridia. Thanks to the French aniridia group Geniris for making this video, that we added subtitles to. Also … Continue reading

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Milkshakes fund rare disease charities

  A business has found an alternative way of raising money for our charity to shaking collection tins – shaking milk! The Pour House in Shrewsbury opened in 2015 as a coffee house by day and cocktail bar by night. … Continue reading

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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

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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

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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

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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

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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

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