The International Dupuytren Society - what we do

Our Mission: Support patients and promote research, education and global cooperation to find a cure for Dupuytren Disease and related conditions.

The International Dupuytren Society is a non-profit organization with patients and medical experts from all involved faculties cooperating (registered VR 201062, Registergericht Traunstein, Germany; last audit and approval (Freistellungsbescheid), 163/109/20367 on 5 Aug 2019).

Our goals are

  • informing about Dupuytren Disease (also called Dupuytren's contracture) and Ledderhose Disease and about available therapy options
  • supporting research across medical faculties to better understand this disease, to improve therapy options and to ultimately find a cure
  • supporting patients who suffer from this disease
  • supporting local country organizations with similar or compatible goals.

We provide a platform for research institutions and hospitals to inform about new research results. We are evaluating patient views, supporting research, organize conferences and recognize excellent research with the International Dupuytren Award.

We further inform on the specific benefits and drawbacks of available therapies to facilitate the right choice of therapy. We want to encourage the dialogue between medical faculties to understand all options and provide each patient with the best advice.

While we will only publish medical results where we believe that there is sufficient scientific proof, we also believe that the free exchange of the personal experiences of patients is a powerful means for patients in dealing with this disease. We therefore also provide a forum to discuss living with Dupuytren's and experience with therapies.

Membership and funding

The International Dupuytren Society acts as an umbrella for country organizations, supports these organizations and supports and represents patients in countries where there is no such country organization. Our members are patients, physicians, or non-profit country organizations representing Dupuytren's patients. Institutions or companies with a commercial interest in treating Dupuytren disease cannot become members of the International Dupuytren Society. Our book keeping and non-profit status are regularly reviewed by the German finance authorities. We are independent, are funded by donations only and not by any medical companies or hospitals, and we have no conflict of interest. The headquarter of the International Dupuytren Society is based in Germany.

What we don't do
The International Dupuytren Society is not promoting a specific treatment. We rather try to inform as objectively as possible on evidence based treatment options and leave it to the patient and the treating doctor to jointly make an informed decision which option is best for the specific situation.

The International Dupuytren Society cannot give medical advice to individual patients. Please consult with your doctor/physician to decide on the best therapy suitable for you. You are invited and more than welcome to place questions or comments in our forum (that's what it is for) and benefit from the experience of other patients.

Acknowledgements

The International Dupuytren Society would like to thank all patients, medical doctors, and everyone else who has been supporting our work with comments, donations, a tremendous amount of energy and without payment. Many medical doctors are providing us with publications and other documents, many hints also are emerging from forums.

 

Management Board of the International Dupuytren Society

1st Chairman: Wolfgang Wach, PhD, Munich, Germany (Wolfgang Wach is a patient)

2nd Chairman: Charles Eaton, MD, West Palm Beach, Florida, USA

3rd Chairman: Prof. Heinrich Seegenschmiedt, Essen, Germany

Treasurer: Michael Romberg, Germany

Secretary and PR: Claudia Fenster-Waterloo, Germany

 

Scientific Advisory Board 

 

Press contact

Claudia Fenster-Waterloo

Schmidbartlanger 9
80939 München

Germany

Phone.: +49 / 89 / 370 538 30 or mobile +49 / 0163 6360945

c.fenster-waterloo /at/ dupuytren-online . de (please modify this email address according to standard format).

 


Page last modified: 19/05/21