On behalf of all patients, mothers and fathers of the European patient-organization & fundraising foundation NephcEurope, we wish you welcome on our website!
NephcEurope is a European wide working patient organization and foundation in the field of Nephrotic Syndrome.
An organization built by parents and patients in order to provide service and support to other patients or their parents.
Not on a national basis but on a European basis!
NephcEurope is open for patients coming from all over Europe to share their experiences and worries being confronted with this disease.
We are a fundraising foundation stimulating the research for the cause and cure of Nephrotic Syndrome.
Recommendations for Successful Patient Involvement in Scientific Research
The Netherlands is one of the front runners in promoting patient participation in scientific research. This has resulted in several studies focusing on the facilitators, barriers and instruments for meaningful involvement of patients. Patient organisations, as well as researchers and health research funders expressed the need to translate this knowledge into recommendations for daily use. Therefore, PGOsupport, a Dutch networking organisation that facilitates patient support groups to share information and expertise, initiated a series of three meetings, a literature scan and an electronic survey. The objective of the meetings was to exchange knowledge and experience and to develop a list of practical recommendations based on available evidence and expert opinions. In total, 30 representatives from 24 renowned organisations participated in this process. Consensus was reached on a set of 9 recommendations, which are presented and explained in this article…..Recommendations participation patients in research_def Aug16