Transversal cross-ERNs Study Group on Pregnancy and Family planning in Rare, low prevalence and complex diseases

The Coordinators Group of ERNs has proposed the creation of a transversal cross-ERNs Study Group on Pregnancy and Family planning in Rare, low prevalence and complex diseases.

Starting from the many proposals of the patients’ communities, we hope that the ERNs can address together this important topic in the agenda. For this reason, the creation of a transversal cross-ERNs Study Group on Pregnancy and Family planning in rare diseases could, in fact, bring a crucial added value in the lives of RD patients across Europe. The study group could be constituted of representatives of each ERN, taking care of driving the research in this field, delivering specific Clinical Practice Guidelines for pregnancy planning and management in rare diseases, as well as develop patients and healthcare professionals education and information.

In addition, considering the upcoming kick-off of the new 19 ERN Registries, it could be also envisaged to create a transversal pregnancy in RD with the main aim of collecting European-wide evidence on the management of this specific condition.

In this regard, if health professionals from ITHACA network wish to take an active role in this initiative by getting involved in the creation and development of this study group, the coordination team will be delighted to receive your proposals.

Please contact the coordination team or Prof. Alain Verloes to discuss this issue.