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Category Archives: Campaigns
Travel insurance for people with aniridia
We are often asked: ”Do I need to declare aniridia when applying for travel insurance?” This is often accompanied by outcry at an exorbitant quote when doing so. Regular travel insurance companies often charge a hefty premium to cover medical conditions. … 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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Combating overhaning branches
I’ve got an idea in my head to do something about plants that obstruct the pavement. I’m fed up with ducking, flinching or actually getting scratched by the branches or leaves of things growing in people’s front gardens. That’s my … 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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Bring rare diseases to the attention of your local politicians
Aniridia Network UK recently joined Rare Diseases UK, an alliance of industry, patient organisations and individuals developing strategic planning for rare diseases in the UK. The European Union defines a rare disease as a disorder which affects 1 in 2000 … Continue reading
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