Have Your Say: Quality Statements for Rare Disease Survey

Rare Diseases risk being left behind when it comes to policymakers making decisions about how to best set up and manage services for those affected by them. We would like your support to counter this by asking you to complete this survey before 30^th November 2024 and have your say about what authorities like the National Institute for Health and Care Excellence should consider in writing their guidance and deciding what good care looks like.

The survey is open to anyone who has a rare disease, is a family member or carer of someone with a rare disease, charities and health professionals, and it is key that this survey captures the insights of as many people across the rare disease community as possible, so that the statements reflect what really matters to people living with rare diseases.