What does good care and treatment for rare disease mean to you?
The rare disease quality statement project is asking the rare disease community to complete our survey, to develop a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases.
We need your support to ensure that this set of statements reflects the whole rare disease community
If you are a patient, carer, healthcare professionals, policymaker, or represent a patient organisation, we want to hear from you. We need your support to ensure that this set of statements reflects the whole rare disease community.
To complete the survey, please go to rarediseaseqs.org.
More information can be found here.
If possible, please do take the time to take part. It’s 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.
