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National rare conditions survey launched

The Minister for rare disease at the UK Government's Department of Health and Social Care has announced a national conversation to understand how we can better care for people living with rare disease, and has launched a survey. It aims to identify the major challenges faced by rare disease patients and the people and organisations that care for them.

Rare diseases which can affect sight include retinoblastoma, aniridia, Marfan syndrome and Alström Syndrome. If you are affected by a rare disease, or are the parent, carer or professional working with someone who is affected, you can find out more and complete the survey here. The closing date for responses is 29th November.

The responses will be shared with the appropriate departments in the devolved administrations to inform their own policies in this area.

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