Aniridia is a devastating ocular disease requiring intensive eye care, social and community support from birth and throughout an individual’s lifetime.

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Celebrate International Rare Disease Day

Celebrate International Rare Disease Day

29 February 2020 will be the thirteenth International Rare Disease Day (www.rarediseaseday.org/) coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities on rare diseases. Aniridia is a rare disease because it affects a small percentage of the population. Each rare disease may only affect a handful of people scattered around the world, however there are over 300 million people living with one or more of over 6,000 identified rare diseases worldwide, each supported by family, friends and a team of carers that make up the rare disease community. Rare diseases are characterised by a broad diversity of disorders and symptoms, a lack of scientific knowledge on the disease, initial misdiagnosis as well as no existing effective cures. Rare diseases thus need an international network of connected experts, researchers and clinicians that, like ANIRIDIA-NET #CA18116 Action, pools resources across borders to encourage communication and innovative research in the disease.

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