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Rare Disease Day 2022

Monday 28th February was Rare Disease Day 2022, an event celebrated in over 85 countries worldwide to raise awareness and generate change for people living with a rare condition, and their families and carers. A disease or condition is rare if it affects fewer than one in 2,000 people within the general population - and several eye conditions meet this definition.

The Gene Vision website is a resource containing information about rare genetic conditions affecting the eye. Topics covered include information and support available for the newly diagnosed, current research, and specific information for a wide range of eye conditions (for both patients and professionals). It also has links to the various organisations and charities providing support to people affected by rare eye conditions including albinism, aniridia, Stargardt disease and Usher syndrome.

On the day itself, The Macular Society highlighted a research project that it is funding to find out why people develop macular dystrophies. To find out more, click here. You can also follow #RareDiseaseDay2022 on Twitter for more information.


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