Article Text

OP0116-PARE Development of The Guide for National Online Youth Platforms Including Implementation in Three Countries
  1. W. Olsder,
  2. L. Van Nieuwkoop,
  3. R. Van Boerdonk,
  4. N. Des Bouvrie
  1., Schiedam, Netherlands


Background Several countries have interest in building an online platform for youth (18–35) with RMDs. However, they face the challenges of lack of experience, know-how and access to best practices on how to prepare and implement such a platform. For more than 10 years the Netherlands has a successful online youth platform, called During its long-term existence the Dutch youth group has obtained in-depth experience regarding how to build and maintain such an online community.

Objectives For many countries who want to build an online youth platform it is hard to initiate, build and maintain a successful platform. wants to support other countries through the development and dissemination of a practical guide. This guide instructs youth groups to build and maintain attractive and lively online platforms for young people with RMDs.

Methods The guide for building online youth communities is based on our own experiences and the content of the current and previous online platforms of The guide includes our best practices and addresses the challenges we faced on the way to establish the platform and to make it sustainable. The guide helps with tips and tricks and includes information about what an online platform is and what the basic principles are, especially for youth with RMDs. It covers topics about how to start, what kind of resources you need and how to involve people at your platform. The guide is already tested in practice by three different countries and can be used by other youth groups. In addition to the guide, conducted two knowledge transfer programs funded by EULAR PARE with Romania, Poland and Italy to implement the guide. These working days focused on sharing knowledge, experience and best practices related to the online platforms. We helped the participating countries in setting up their online youth platform and we received valuable feedback to improve our guide. By giving presentations and workshops, all the participating countries had a concrete plan at the end of the program to start an online youth platform.

Results The main result of this project is a tested guide to establish and maintain online youth platforms. The guide can be used by patient organizations in any European country. Other outcomes are trained youth experts in several countries and a growing number of online platforms in the future. Each participating country (Romania, Poland and Italy) has made a promising start and will hopefully within a few years have developed a successful platform. The countries are satisfied with the guide as support in building an online platform for youth with RMDs.

Conclusions The guide is a successful method to start an online youth platform. Within the upcoming years the guide can be used in more countries. In the future the guide can be used to get a national online youth platform in every European country.

Disclosure of Interest None declared

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