Please complete the survey if your organisation is not PIF TICK certified➡️

www.surveymonkey.com/r/ZHD8JPP

The purpose of this survey is to understand the barriers rare disease patient organisations face in producing health information and joining the PIF TICK certification scheme. The survey is being run by PIF on behalf of DHSC.

The PIF TICK is the UK Trust Mark for Health Information. It is operated by a charity, the Patient Information Forum (PIF), on a not-for-profit basis.

150 organisations are certified by PIF TICK.

We thank Jim Shannon MP for taking the time to have ongoing conversations with us and championing RAIRDs in Parliament. Our discussion centred on our Rare Care Matters report recommendations, our work with the quality standard for rare disease and recent policy developments.

Thank you to James Evans MS for taking the time to meet with us last month and being a champion of RAIRDs. We took the opportunity to talk about the implementation our our Rare Care Matters report recommendations in Wales.