Information for patients

As a patient with a rare disease or patient relative, you want to receive information that is specific to your situation.

The EMRaDi project partners gathers in-depth expertise in the field of rare diseases and cross-border healthcare.

As the EMRaDi project progresses, this page will include the guides and tools we develop: it will provide you with information on the medical and non-medical care of rare disease patients in your region and in a cross-border context (in the Euregio Meuse-Rhine).

Focus of the EMRaDi project : 8 selected rare diseases

The EMRaDi project focuses on specific rare diseases but also aims to help other rare disease patients and their relatives. 

In Belgium

In Germany

In the Netherlands

In the European Union

EMR Rare Disease Day

On 28 February 2019, the EMRaDi consortium gathered more than 20 speakers and 120 participants on the occasion of Rare Disease Day at the Euregio Meuse-Rhine.

During this day, the preliminary results of the EMRaDi project were presented and the following question asked:

How can the health and quality of life of patients suffering from rare diseases be improved in the Euregio Meuse-Rhine, in cross-border regions and at European level?

This general question was examined using 3 key themes: awareness, patients undiagnosed/without diagnosis, as well as cross-boarder cooperation and healthcare.