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Patient experience survey for people with a rare disease

Genetic Alliance UK is asking people who are affected by a rare disease or undiagnosed condition to complete a patient experience survey. The findings will help to measure the impact of key policy work (such as the UK Strategy for Rare Diseases), inform the work of the charity and raise awareness of the issues and challenges facing those affected by rare and undiagnosed conditions.

Rare diseases that affect the eye include Behcet's and Alström Syndrome. You can complete the survey, which closes on 31st July, here.

For more information about Genetic Alliance UK, visit their website.


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