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

25 May 2022

An ERN ReCONNECT working group* focused on pregnancy and family planning, launched a survey to capture patients’ and caregivers’ unmet needs related to pregnancy and family planning.

The survey is directed to patients with rare and complex diseases (and their caregivers) who have been/are pregnant.

Results of this survey will be analysed and ways of addressing unmet needs and sharing good practices will be discussed in the working group.

*The working group is led by ERN ReCONNECT (the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases). Alexandra Benachi (Gynecologist-Obstetrician, Hôpital Antoine-Béclère) and Beverley Power (CDH UK), members of ERNICA (European Reference Network for rare Inherited and Congenital – digestive and gastrointestinal – Anomalies), are part of this working group.

DEADLINE SURVEY: 15th June 2022

The survey is available in seven languages:

Language Survey 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

 

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