Rare Disease Quality Statements (A survey)

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 professional, 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 share your voice, please use the QR code, or go to rarediseaseqs.org, to complete the survey.