The National Reference Centre for Wilson’s Disease has formed part of the G2M since April 2016.
The French Society for the Study of Innate Errors affecting Adult Metabolism.
A European alliance of patient organisations and individuals active in the field of rare diseases.
The aims of this association are to:
- help Wilson’s disease patients and their families by offering moral and practical support
- inform the population about this disease
- raise awareness in the medical profession so as to enable an early diagnosis
- contribute to research: genetics, pathophysiology and therapies
The European EuroWilson website contains information on Wilson’s disease that may be of interest to both patients and their families and healthcare professionals.
A large number of documents can be downloaded, such as:
- A review of the literature (Wilson’s Disease Watch)
- The results of a patient questionnaire implemented in 2012
- A guide to Wilson’s disease
- Wilson’s disease in young people
A portal for rare diseases and orphan drugs.
A charitable organisation set up in October 2011, « Maladies Rares Info Services » is a health information portal dedicated to rare diseases. It is designed for use by patients, their families and healthcare professionals.
You can express your views freely and discuss problems during conversations when your anonymity will always be respected, by calling:
- +33 1 56 53 81 36
The mission of the Rare Diseases Alliance is to address issues common to rare diseases and disabilities, of genetic origin or not, and to encourage and support all actions in favour of information, training, support, claims and research, etc.
The objective of the Foundation for Rare Diseases is to develop research in this area in order to encourage the emergence of new therapies, as well as improvements to the lives of patients and their families.
AP-HP is a globally-recognised university hospital network of European dimension. Each year, its 39 hospitals care for seven million patients: in outpatient clinics, emergency departments, during scheduled periods of hospitalisation or in the context of home care. A public healthcare service is assured for all, 24/24.
The Neurology Department at Hôpital Lariboisière in Paris is home to the National Reference Centre for Wilson’s Disease.
European Patients’ Associations:
United Kingdom: www.childliverdisease.org
United Kingdom: www.climb.org.uk
United Kingdom: www.wilsonsdisease.org.uk