ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the E-Rare schemes.
The questionnaire—already available here—seeks first-hand assessments of what works, and what falls short, when patients are invited to shape studies that ultimately affect their own lives.
The survey will be open until the end of July and all responses are confidential.
Take the survey: https://shorturl.at/ePVuL
More information: https://shorturl.at/c03db