News from the international community:

COVID 19 Vaccinations

Please find enclosed the official recommendations on Covid19 Vaccinations on behalf of the European Reference Networks for Rare Diseases.




  • Looking for Nephrotic Syndrome clinical trials world wide?
    Please have a look at this site
  • In case you look for European Research and trials click here
  • New Dutch treatment researchproject
  • LEARNS project The Netherlands and Belgium



RD- connect News:  Newsletter


Recent new and important articles:

Theme: treatments
News on Rituximab treatment
News on Rituximab trial
News on ABO incompatible kidney transplantation

Theme: Facts and figures


Theme: Patientinvolvement

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

One Response to “News

  1. Niels Robin

    Ik heb neufrotisch syndroom gehad van 3 tot 18 jaar. De dochter van mijn zus heeft deze ziekte ook gehad voor 1 jaar.
    Ik zou graag mee helpen naar dit onderzoek


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