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Ladies and Gentlemen,
I am a vasculitis-patient myself and am one of the founders of the Vasculitis Working Committee. We are happy that more than 200 patients, caregivers and doctors have come to attend our 8th nation-wide meeting today. You are most welcome! We, that is the Vasculitis Working Committee, have had many helping hands in organising this event. Helpful ideas came from the Rheuma-hospital Bad Bramstedt, from Prof. Gross and PD Dr, Reinhold-Keller, Dr. Wagner-Bastmeyer and Mrs Hensel from the German Rheuma-League. We are obliged to them and to the doctors who will remain unmentioned here, all of them have put a lot of their spare time into this project.
What does the Vasculitis Working Committee do? What have we acchieved? What are our aims?
1. We have been able to reach many patients all over Germany and in foreign countries as well and giving them help and assistance.
2. We have been able to assist in setting up local support-groups, which by now are able to work independently.
3. We have our own website now www.vaskulitis.org where you can find a lot of information on vasculitis and links to other organisations. We have had more than 2.300 visitors from 21 different countries, from Thailand and Japan to New Zealand and the United States. Most of the information given is available in English as well.
4. We have attended several events, e.g. the "129. Annual Conference of North-West-German Society for Inner Medicine" and a workshop "maintaining quality by transferring knowledge and PR-work".
5. Quite often we have been asked questions regarding industrial law or social problems. In the future we might be able to give more detailed answers, since we will be supported by a qualified person. Nevertheless it might be necessary for the individual patient to get professional advice as soon as it comes to questions regarding industrial law. A qualified lawyer specialised in this field might be a good choice then.
6. One of our aims is to make vasculitis more widely known among doctors and patients alike. An early correct diagnosis can shorten the time of suffering considerably for the patient and it could avoid incurable damage to organs.
7. We are in touch with other support-groups like Wegener's Granulomatosis Association WGA from the United States. We are happy to have with us today Judy and Joyce Kullmann. Joyce is the Director of the WGA. Both ladies have brought informative papers which can be obtained in the foyer.
In recent years vasculitis, still to be numbered among the rarer diseases, has been diagnosed correctly more often. More and more doctors recognise the illness at an early stage. This gives us hope, since treatment and medication are being constantly improved. Research on vasculitis is going on, of course, but within the wide spectrum of diseases, much less intensively (and extensively) than we would wish. We are lucky that Bad Bramstedt does belong to the relatively few research-hospitals.
Right now the Vasculitis Working Committee is a group of 8 patients, 2 of whom cannot contribute to our work at the moment in a way they would like to due to bad health. Johannes Loewe, whom many of you may know, died at the beginning of this year after suffering for a long time. We mourn for him and we will keep him in our memory. We are eagerly looking for two new members who would be willing to support our honorary work. We meet regularly right here in Bad Bramstedt hospital. So "volunteers for the job" shouldn't live too far from here. People with computer skills would be especially welcome, we are eagerly waiting for you to call us.
Has anyone of you read our newsletter? From our first Information Congresses on we have been asking you uninterruptedly to submit articles for our newsletter. Believe it or not, not a single letter has reached us yet. We won't give up hope though, but repeat our plea once again: Write to us! Tell us about your experience, your problems, your life! I would like to ask another, small favour of you: please fill out our questionnaire "how did you like it?" put down your whishes, your criticism and your suggestions for improvement, so that we can organise an even better congress the next time. We are happy about "praise" as well and will, on that basis cling more assuredly to things which have proved successful.
You can find our attendance-list in the foyer.
We work under the roof of the German Rheuma-League, whose regional section has supported this event. Please subscribe to this organisation. Your subscription fees will help to enable us to do future work.
Thank you for your attention. To you and us alike a successful event!
Peter Zelewski
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updated 17.02.2004
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