E. L. E. F.
CARING AND SHARING, Newsletter 4
Report from Germany

In the last six months we had quite a lot of activities.

25. May 95

A discussion with a doctor and a civil servant of the department for disability was held. Especially discussed were the criterion for the certificate of disability.

10. June 95

We had the pleasure to open our 50th Regionalgroup.

10 - 18 June 95

Exhibiton "active life" in Düsseldorf. We had a stall there to publicize our organization and attract new members.

01. July 95

Workshop: SLE and children Dr. med. G. Ganser and Dr. med. Frosch held very interesting talks. During this workshop the initiative "Parents help Parents" was created, i.e. to have a list of parents who have children with SLE, so that they can get into contact with each other.

15. July 95

Workshop for Lupuspatients was held in Munich by Prof. Dr. med. Herzer.

28. August 95

Workshop for Lupuspatients was held in Düsseldorf by Prof. Dr. med. M. Schneider. The form of this workshop was an education for patients -see article in this newsletter by Prof. Schneider- and was very well attended.

23. September 95

Talk by Dr. med. Hiepe, Charitè Berlin about a new form of therapy with SLE -monoclonale Antibodies-

in April 95

A German televisionstation broadcast a report about the drug Deoxyspergualin -DSG- in which a German doctor told the viewers that this drug could cure SLE.
In the coming weeks we had about 500 phone calls and about 100 letters from patients asking about this drug. This had the effect that the ladies on our board were very busy in answering those calls and letters.
In the August issue of our Newsletter "The Butterfly" we published an article about DSG, written by Prof. Schneider. In this article he said that this drug has yet only been released in Japan. It is used in the field of transplantation of organs, but not as a medication for SLE.

Rudolf Hocks