Have Your Say: Help Shape Quality Standards for Rare Disease Care
RAIRDA’s Rare Disease Quality Statement Project is inviting patients, carers, healthcare professionals, policymakers, and patient organisations to take part in their second survey. This important project aims to define what high-quality, sustainable care, treatment, and management should look like for people living with rare diseases.
Following invaluable feedback from the first survey, the statements have now been refined, and your input is needed to help finalise them.
You don’t need to have taken part in the first survey to get involved.
Your voice is vital to ensure these statements truly reflect the priorities and needs of the rare disease community.
Who can take part?
- Anyone over 18
- Patients, carers, healthcare professionals, policymakers
- Patient organisations
Help shape the future of rare disease care by completing the survey here: rarediseaseqs.org
Your insights matter, thank you for sharing your voice.
