The Wil-Ecco survey

In this unprecedented period marked by this lockdown imposed to better manage the pandemic linked to the COVID-19 virus, the Wilson Disease Reference Center (CRMR Wilson) questions the experience of lockdown by patients suffering from the disease from Wilson. In order to assess how you are living or have experienced lockdown, we invite you to participate in an online survey, accessible until June 16, 2020.
If you (or your child) wish to participate in this survey, do not hesitate to click on the following link (accessible via your smartphone or computer):
A second investigation will then be offered to you, if you agree, six months after the end of lockdown.
We thank you for your precious help, and wish you all a happy « off-lockdown » !


Since September 1, 2019, the Wilson Reference Centre for Rare Diseases has been transferred from the Lariboisière Hopsital to the

Hôpital Fondation Adolphe de Rothschild

at 44 avenue Mathurin Moreau, Paris 19e . 

One of the missions of the Reference Centre for Rare Diseases (CRMR): Wilson’s Disease and other diseases linked to the copper, is to monitor the epidemiology of this condition.

If you suffer from Wilson’s disease and are not yet included in the national anonymized register*, then please contact us!

* In order to better understand Wilson’s disease, the CRMR for Wilson’s disease has set up a national register that lists all affected patients who are followed in France.


Aarhus, a charming city in East-Central Denmark,

will be THE place to exchange about Wilson’s disease

May 9-12, at an international symposium organized by Professor Peter Ott.

France will be represented to talk about epidemiology and genetic prevalence,

exchangeable copper and the experience of liver transplantation.

I warmly invite you to submit an abstract on your work

knowing that a certain number will be selected for a presentation (poster or oral)

and will receive a scholarship to cover registration and accommodation costs.

To view the program and recommendations for authors to submit an abstract, click here.

The team of the coordinator-site in Lariboisiere Hospital from the Reference Centre for Rare Diseases « Wilson disease and other rare diseases linked to the copper » has written this practical guide in order to better inform people about Wilson disease. Inside, you will find the answers of your main questions you may ask yourself about disease, diagnostic, treatment and follow up.

Each patient is different that is why some information in the practical guide can not be adapted to your individual case. Don’t hesitate to ask for additional information to health professionals in charge of your disease.

Download an extract from the practical guide

Proceeds from the sale of this book will go to support research on Wilson’s disease and other heavy-metal diseases.

recettes maladie Wilson

Book of low-copper recipes

Mégane, a 20-year old patient and medical student, has proved she is also a creative cook and excellent photographer! She proposes delicious recipes for everyone: those who are not following a diet and those who suffer from Wilson’s disease and have to try and eat low-copper foods throughout their lives.

23 sweet and 18 savoury dishes to be shared with friends and family. Simple and delicious recipes for guests or for everyday meals…. Mégane has focused on both options.

Download an extract from the book

Proceeds from the sale of this book will go to support research on Wilson’s disease and other heavy-metal diseases.

Wilson’s disease explained to children

The CRMR Wilson has updated its brochure designed for children with Wilson’s disease and their parents.

Download the brochure

maladie de wilson
conseils alimentaires wilson

Dietary advice – Wilson’s disease

The Dietetics Department at Hôpital Lariboisière in Paris, working in collaboration with the CRMR Wilson, has produced a booklet of advice for Wilson’s disease patients on limiting the amount of copper in their diet while still being able to eat healthily. The guidelines in this booklet mean they can produce a range of menus adapted to the condition.

Download the dietary advice