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)
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