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

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 asking patients with Wilson Disease about their experience with pregnancy or pregnancy planning. We would appreciate if you could pass the survey on to your patients. There are 6 languages available, and they can easily access the survey through this link or by scanning the QR code below. The patients’ survey will be open until 15 February 2025. This survey takes approx. 10 minutes to complete.