Tag Archives: rare disease day

Rhiannon’s Story

“I’m immensely proud of my loving little girl in every possible way, Probably her toughest personal challenge this year was learning to jump, due to her poor vision, but her persistence paid off.” For Rare Diseases Day 2021, the key … Continue reading

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Faith’s story

“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries” Continue reading

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Laura’s story

Laura, who has aniridia, kindly reached out to us to share her story. Her passion for sport and strength to support others to find the enjoyment she has, shines through. For Rare Diseases Day 2021, the key messages are; Rare … Continue reading

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Share your aniridia story on Rare Disease Day 2021

Share stories of how aniridia impacts their your life, to raise awareness Continue reading

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Rare Disease Day 2020 Meetup

Rare Disease Day is always a very good opportunity to bring people together and raise further awareness of aniridia. To mark the occasion, trustee Eleanor Burke hosted an aniridia meetup at Wynn’s Hotel in Dublin on Saturday 29 February 2020, … Continue reading

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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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