Pregnancy and Family Planning in rare diseases: a survey for patients and clinicians

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MetabERN is participating in a transversal, cross-ERN study group on Pregnancy and Family Planning in rare, low prevalence and complex diseases. This working group aims to discuss sensitive topics including pregnancy and birth monitoring, medications during pregnancy and lactation and management of the newborn. In addition, parenthood, contraception, fertility preservation and assisted reproduction are other important topic that will be addressed.

In this context, two surveys are being disseminated with the aim to collect Europe- wide evidence on these specific aspects in rare and complex diseases:

• A survey addressed to patients and caregivers, entitled “Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers” is available in 8 different languages, following the links below. 
• A second ERN-wide survey, reserved to healthcare professionals,  aims to outline the challenges and the good practices related to these aspects in rare and complex diseases in ERN centers.

Completing and disseminating these surveys is a great opportunity to contribute to the important topic of pregnancy and family planning, bringing crucial added value in the lives of rare disease patients across Europe.

Survey for patients: “Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers”. Available in 8 languages: Bulgarian, Dutch, Italian, French, German, English, Portuguese, Spanish. 

Survey for clinicians: “Survey on the state of the art on challenges and good practices related to pregnancy and family planning in rare and complex diseases for healthcare professionals”. Available in English.