Requests for patient perspectives in health, research and social policy-making are on the rise as the benefits associated with evidence-based programmes or policies are being increasingly recognised and required by all stakeholders. To best respond to a growing advocacy role and achieve a high-quality evidence-base from people living with a rare disease, the European Rare Disease umbrella organisation, EURORDIS, have established the Rare Barometer Programme.
This programme will rely heavily on patient engagement to inform sound policy from the patient perspective by carrying out surveys, focus groups, individual face-to-face interviews and other opinion-gathering methods to gain firsthand feedback from patients.
Join the nearly 2,000 people that voiced their opinions about the use of complementary & alternative therapies in the management of rare diseases by responding to this short #RareBarometer survey. By taking part, you will be contributing to the report for pseudomyxoma peritonei.
To take part, please go to the online survey.