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Tag Archives: rare disease day
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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Meet up to mark Rare Disease Day
18 members came to one of 4 meet ups around England to celebrate international Rare Disease Day 2024. They got to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. As always it was a wonderful … Continue reading
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
Meet ups for Rare Disease Day 2023
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 … Continue reading
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
Faith’s story
“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries” Continue reading
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
Share your aniridia story on Rare Disease Day 2021
Share stories of how aniridia impacts their your life, to raise awareness Continue reading
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
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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