Information and support are vital for people living with rare diseases, yet it can be difficult for people to find information they can trust.
Research by Ipsos for PIF in 2024 found
- 1 in 2 people find it difficult to access health information
- 2 in 10 people with long term conditions had been given information by health professionals since diagnosis
- 2 in 3 people supported the verification of health information
- 1 in 10 said they had been impacted by misinformation
The Patient Information Forum operates a trust mark for health information. The PIF TICK. 150 organisations are certified, helping the public identify trusted health information.
The Rare Disease Action Plan recommends signposting patients to PIF TICK certified health information.
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.
Please complete the survey if your organisation is not PIF TICK certified.
Estimated time to complete: 3 minutes