Concerns raised with the Rare Disease Policy Board

Last week, the Rare Disease Policy Board met, a group which includes attendees from UK, Wales, Scotland and Northern Ireland Governments, and the NHSs. The two patient representatives on the Board, Beverly Searle (Unique) and Kerry Leeson-Beevers (Alstrom Syndrome UK) raised the concerns of our community at this meeting.

Through the weekly catch-up with our members, we have been collating all the issues our community has been facing. Beverly and Kerry added to these and shared them with the Board meeting.

Here is a summary of all these concerns, which include:

• issues with support, and the letters that classify individuals as vulnerable, and entitle them to support
• challenges accessing the right kind of information
• how to deal with a care budget when it is too risky to have a carer in the home
• how isolation is affecting people living with genetic, rare and undiagnosed conditions
• impact on routine care
• longer terms issues, and how long we can wait for normal services to resume

We hope the attendees of the Board will begin to address these issues, and will be writing to them to ask for their responses.

To join our weekly check-in for any organisation supporting the UK’s genetic, rare and undiagnosed community email covid-19@geneticalliance.org.uk.