Launch of the ‘Rare Reality of COVID-19’ report:

Today Genetic Alliance UK has launched its report on the Rare Reality of COVID-19 for patients and families affected by rare and genetic conditions. The report presents findings from the EURORDIS Rare Barometer COVID-19 Experience Survey, and from Genetic Alliance UK’s weekly community meetings during the months of April, May and June 2020. People living with rare conditions have been placed under immense pressure by the COVID-19 pandemic. Access to appropriate support, information, care and treatments has become more difficult and levels of social isolation have been increased.

The recommendations hope to mitigate the negative impact of COVID-19 on people living with rare conditions and prepare the UK better to support our community in the case of another pandemic.

Are you affected by a rare condition or are you the carer for someone who is?

It is now more important than ever to complete Genetic Alliance UK’s Patient Experience Survey. This time it coincides with the development of the new rare disease framework – the policy that will guide rare disease services in the UK over the next few years. It is vital to get a good picture, now, of your experiences so that any changes can be tracked once the new framework comes in and hold governments to account. You can complete the survey here:

If you have any questions, please email Emma: