ERN RARE-LIVER Wilson Disease and Pregnancy Survey - for Physicians

Please collaborate with the European ERN RARE-LIVER Wilson Group by answering this anonymous survey on pregnancy and contraception for Wilson Disease Women. Thank you for your collaboration!

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Wilson disease is a rare disease of copper metabolism mainly affecting young individuals. Due to the rarity of the disease, data regarding pregnancy and breastfeeding among patients is low evidence-based and/ or scarce. Consequently, clinical recommendations concerning this field might be variable among different specialists and countries and international guidelines do not face this issue equally.

This survey is divided into 5 main topics: general issues, contraception, pregnancy, breastfeeding and multidisciplinary and can be answered in no more than 5 minutes of your time. Only one physician from every institution is allowed to answer to minimize duplicities. The survey will be open until 15 February 2025.

Please access the survey via this link. You are welcome to forward this survey to colleagues outside the ERN centres as well!