Do you also want your voice heard in PSC research?
Would you like to have a say in the priority setting for PSC research? And give researchers, regulators and other stakeholders a better idea on what having PSC means in your daily life?
The biggest pan-European PSC Patients Survey that has ever taken place is now closed. We want to thank all respondents for their input. Hundreds of PSC patients filled in the survey, from all corners of the world. Yes, from over 35 countries… .
The feedback collected will assist the PSC community to move forward and will be shared, free of charge, with the PSC Community.
The survey was available in 6 languages:
Nederlands / Dutch
Français / French
Deutsch / German
Norsk / Norwegian
Svenska / Swedish
To see the results of the survey, check out this document: Report PSCPE Europe Survey
And we are delighted to inform you that the results of the survey have already been used on various occasions, both by Patient Advocates as well as researchers & clinicians.
New surveys will be posted here in due course. There will also be an announcement regarding new surveys on the PSC Patients Europe Facebook page and we will also send a tweet: our Twitter account is @PSCPatientsEur.
And we encourage you to sign up for the multi-lingual surveys from Rare Barometer Voices, a Eurordis initiative.
You can sign up for free and you will receive a quarterly email, enabling to make your voice heard by filling in a survey in the language of your choice. These disease-transcending surveys allow us rare disease patients to have a bigger voice on the interenational scene, including the European Parliament, the WHO and the UN, to name a few.