Our Organisation
Who we are
Morbus Wilson e. V. is a non-profit German organisation that has been providing information and counselling to people affected by the rare copper storage disorder Wilson's disease and their relatives in all areas of life since 1990.
The organisation is a member of ACHSE e. V., BAG Selbsthilfe, GPGE and LAG SELBSTHILFE Bayern e. V.
Here you can find contact persons of the organisation.
The scientific advisory board supports us with medical questions.
Our goals
- Informing as many people as possible about the existence of Wilson's disease and how it manifests itself. Due to its rarity, it is often diagnosed too late. The symptoms initially point to other diseases, which leads to misdiagnosis.
- Supporting those affected to enable them to live a long, happy life that is as unaffected by the disease as possible
- Empowering patients, relatives and interested parties, …
… to gain their own knowledge about the disease, diagnoses and treatment.
… to represent their interests confidently and independently.
Facts and figures
- The organisation was founded in 1990.
- The support area covers Germany.
- The organisation had around 600 members in 2023, including around 300 Wilson's disease patients.
- Membership fee: €40 for individuals and €70 for families per year
- The organisation is run entirely on a voluntary basis by people with Wilson's disease and their relatives.
What we offer
- Information, counselling and help for people with Wilson's disease, their relatives and their family members and those interested in Wilson's disease
- Individual support for newly diagnosed patients regardless of membership in our organisation
- We arrange contacts to the nearest medical Wilson's disease specialists or to affected persons
- An annual popular science symposium for patients and their relatives, at which experts, primarily from the medical field, give lectures and at which we, as patients and relatives, offer workshops on patient-relevant topics
- Regional meetings for the exchange of experience between patients, relatives and medical professionals
- An annual members' magazine “Morbus Wilson Nachrichten” (Wilson’s Disease News)
- Flyers providing information about the disease
- Supporting research regarding Wilson's disease
- We offer members of the organisation the opportunity to subscribe to a newsletter and receive information via our internal members' magazine - ’Morbus Wilson Nachrichten’ (Wilson’s Disease News)
- There are certain areas where we cannot provide support: These include medical diagnoses and legal advice. The scientific advisory board supports us with medical questions.
Would you like information or advice on any aspects of Wilson's disease? Please write to us using our contact form.
Becoming a member
If you would like to become a member of our non-profit self-help organisation, you can download the application form or use the online application form.
