22 March 2022

ERN Euro-NMD is participating in  a transversal cross-ERN Study Group on Pregnancy and Family Planning in Rare, low prevalence and complex diseases.


The resulting surveys have the aim of collecting Europe- wide evidence on the management of this specific condition and bringing crucial added value in the lives of RD patients across Europe.


Completing and / or  disseminating  the  survey is a great opportunity for you all to contribute to the important topic of pregnancy and we really appreciate your feedback.


Survey for patients: Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers:

(Available in  9 languages)


Language Short Link
Bulgarian https://bit.ly/preg_bg
Dutch https://bit.ly/preg_nl
Italian https://bit.ly/preg_ita 
French https://bit.ly/preg_fra
German https://bit.ly/preg_de
English https://bit.ly/preg_eng
Spanish https://bit.ly/preg_es

Portuguese  https://bit.ly/preg_pt 

Now available in Polish : https://bit.ly/preg_pl

Survey for clinicians also available : https://ec.europa.eu/eusurvey/runner/ERN_PregnancyFamilyPlanning_HCPs


If you would be so kind to also share these with European-based patients and patient organisations, that would be most helpful.


With kindest regards to you all and many thanks in advance for your very precious input.


EURO-NMD Coordination Team

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern