Recognising the multifaceted symptoms that can indicate Wilson’s Disease (MW) remains challenging. However, it is possible to live with MW, provided that the disease is recognised at an early stage and it is treated professionally and with discipline over the course of the patient’s life.
The self-help group Morbus Wilson (MW) Switzerland was founded in 2004 by about a dozen Morbus Wilson patients and their relatives. This group subsequently grew and also gained external recognition, which led us to establish it as an association in February 2012. We are in close contact with Swiss-medic I www. swissmedic.ch, RDAF I www.rda-forum.org, ProRaris I www.proraris.ch, SRSK (Swiss Register of Rare Diseases) and with our partner association in Germany I www.morbus-wilson.de.
There are more than 200 patients diagnosed with Wilson’s Disease in Switzerland. Register data would provide clarity on the number of cases and also strengthen know-how.
The central concern of the association is to keep a watchful eye on what findings are being made in medicine and to share them with those affected and other interested parties. To this end, we offer biennial meetings at which MW specialists, mainly from the fields of hepatology, neurology and psychiatry, can exchange their insights and findings and learn from each other. The perspective of those affected, who are familiar with different symptoms and have individual experiences with their respective therapies, offers a unique opportunity also for the professional community to obtain comprehensive information about MW.
You are also welcome to contact us as a non-member and attend our meetings. Especially on the second Saturday in March in Solothurn, where expert speakers inform about current findings and developments.
Our association works non-profit and is neither denominational nor bound politically. We do not pursue any economic goals. We are financed by membership fees and donations.
info@morbus-wilson.ch
Portrait
The Wilson’s Disease (Wilson’s Disease) Switzerland self-help group was founded in 2004 by just under a dozen Wilson’s Disease sufferers and their families. In February 2012, we established ourselves as an association to ensure our social recognition. This association structure allows us to participate in the “Patient and Consumer Organization Working Group” at Swissmedic (www.swissmedic.ch). We are an active member of RDAF (www.rda-forum.org) and, of course, of ProRaris (www.proraris.ch), our umbrella organization. We maintain a lively and friendly exchange with our partner association in Germany (www.morbus-wilson.de) and with our colleagues at the SRSK (Swiss Rare Disease Registry). Over 200 people diagnosed with Wilson’s Disease live in Switzerland. It is currently impossible to give an exact number because registry data is still scarce.
Aims and Objectives of the Association
The central aim of the association is to vigilantly monitor emerging medical discoveries and share them with those affected and other interested parties. To this end, we offer biennial meetings at which MW specialists, primarily from hepatology, neurology, and psychiatry, can exchange their experiences and insights and learn from each other.The perspective of those affected, who are familiar with different symptoms and have individual experiences with their respective therapies, offers a unique opportunity for professionals to gain comprehensive information about MW. At these meetings, new and unusual therapeutic approaches that could help alleviate the various symptoms can also be presented and discussed.
We welcome everyone who shares their experiences and questions with us. This way, we can learn from each other and positively influence our therapy, and thus our quality of life.
Last but not least, personal exchange can be beneficial and enriching.
You are also welcome to contact us and attend our meetings even if you are not a member.The second Saturday in March is Wilson’s Disease Day Switzerland.On this day, the general assembly takes place in odd-numbered years, and a symposium takes place in even-numbered years, where experts share current findings and developments.
Our association operates selflessly and is neither religiously nor politically affiliated. We do not pursue any commercial goals. Funding is provided through membership fees and donations.
Your contact point after or before a doctor’s visit.
Do you have a confirmed diagnosis or are you suspicious based on symptoms described under “Illness”? If you would like to speak with someone you trust, please don’t hesitate to contact us.
info@morbus-wilson.ch
You are helping our nonprofit organization build a strong foundation and actively achieve our goals. The Wilson’s disease patients thank you from the bottom of their hearts.
