11 June 2000
E-mail from Wilma and Peter van Poppel
Terheijden - Holland

Dear Dr. Stall,

I will try to give you a review of the things we are doing for WD patients.

About three years ago I found out that there was nothing to be found on the internet about WD in the Dutch language. So I made a small informative Dutch homepage. About a year later I updated my homepage and added a lot of information: about WD, progress, the treatment, heredity, diagnoses, etc. At the moment my page has about 2500 visitors yearly.

I recently added a kind of newsgroup, so that patients can exchange information. We (my wife and me) also became member of the "Nederlandse Leverpatienten Vereniging" (The Dutch Liverpatients Associaton). This association recently started to work with 'working groups' This are groups of four or five persons (volunteers) who help the association with their job for a certain disease. So we started the Wilson Disease Workinggroup.

We are working about 1 1/2 year as working group and already had our first national meeting for WD patients and their relatives in Utrecht in november last year. 25 november this year we will have our second national meeting. Speakers in this meeting will be Dr T.U. Hoogenraad and Dr. R.H.J. Houwen.

We also recently helped making a dutch patients-folder about WD. My telephone number is published to the members of our association as contact-person for WD in Holland. We also publish articles in the "NLVisie", this is a publication which appears every three months for the members of our association.

As you see, we are a young WD-group and we have still a lot of things to do.

We wish you the best. Greetings from Holland.

Wilma and Peter van Poppel
and the Wilson Disease Workinggroup