Meet the EUmetriosis Patient and Public Involvement Steering Group: Endometriose Stichting

As part of our Team Spotlight series, we’re introducing Endometriose Stichting, the National Patient Organisation in the Netherlands for those living with endometriosis and/or adenomyosis.

What is your role in the EUmetriosis project?

Together with Ja sam 1 od 10 (Patient Organisation for Endometriosis in Croatia) and Endometriosis UK (Patient Organisation for Endometriosis in UK), a group of volunteers have been put together who act as advisors for the research that is being done within the EUmetriosis project. These volunteers all experience endometriosis or adenomyosis themselves and they are involved along with the researchers on recruitment materials, information and communication about results of research, and the burden for study participants. The volunteers are also known as PPI partners – Patient and Public Involvement partners.

What excites you about the project?

There are many different types of research being done within EUmetriosis, from lab research, to clinical trials, to self-management tools. It is very important that current research focuses on all these different aspects of endometriosis, as the disease impacts daily lives in different ways.

Why is patient organisation involvement so important?

The volunteers or PPI partners are the ones who know what it is like to live with endometriosis. Therefore, they know best what current research should focus on (of course in consultation with researchers and healthcare professionals), in order to use the limited funds that we have as best as possible. They know how quality of life can be best improved and should therefore give input from their perspectives from start to finish in scientific research. 

Is there anything else you’d like to add or share with those following the EUmetriosis project?

We are very proud of all the volunteers and researchers who were willing to join this project. Although it is not always easy, and sometimes people speak different languages (literally and figuratively), it takes courage and flexibility to be involved in these large-scale projects!