ELEF-MEETING November 1995, Lisbon (P)
SLEV is part of the Swiss Polyarthritis Association
Tasks of our board are mainly organisational:
Number of members October 1995: 179
March 1995: Annual meeting where the board members were reelected.
April 1995: As a publicity campaign we sent a special newsletter to all members and all German speaking rheumatologists. We presented ELEF and ist member countries by summarizing their articles of Caring & Sharing. This newsletter was welcomed by our members and very well received by both hospitals and doctors. We tried to create some conciousness about belonging to an European Federation.
Medical Talks 1995: Since 1995 we have also included people who suffer from sclerodermia, as some members have this related disease beside lupus.
Subjects:
Average attendance was between 50 and 80 people.
For the coming year we have planned three talks so far. While up to now doctors have always had to be invited to speak, there has been one doctor and one hospital who contacted our group on their own and offered to present something about lupus.
Advertising Offers SLEV
To call attention to our disease with ist complicated name and to gain members we are offering umbrellas with our group name and logo. (Folio) They are sold at a small profit to all interested members and other people. If they sell well, we will think of selling other articles later on. I would like to mention here that the idea was taken from the British Group which sells such nice things. Thanks!
The youngest group is the one in the eastern part of Switerland. Each group meets once a month, either to have coffee and chat or for public appearance.
Examples are:
Zurich Group: Grill party in summer (Folio)
Basle Group: Stall with information (Folio)
(In Basle the local coordination office for all self-help groups offered this opportunity. Possible deficit would have been taken over by the organizer.)
To maintain a close contact both among the regional groups
themselves and also between each group and the national board,
we have two meetings a year where the locally responsible people
get together with board members. Exchange of experience, financial
matters and projects for the near future are openly discussed.
For 1996 we asked a professional woman to give us a speech on
how to lead a self-help group.
1995 many interested people have called at SLEV, although we have not been in the media as much as the year before. We have noticed that doctors were more open to hand out our informational leaflets, and SLE has become a more widely discussed subject in nurses' formation. In the near future a research programm about lupus will be started, initiated by the University Hospital of Berne (Immunorheumatologist Department) and a specialist from St. Gall.
Our self-help group has been going well this past year. Marianne and I, who have again the opportunity to join you all at this ELEF-meeting, are happy to get new motivation for our work by talking to you, by laughing with you and feeling with you that lupus creates a feeling of togetherness here in Portugal.
Thank you all for your friendship!
Kathrin Gerber-Wirz
E. L. E. F.
European Lupus Erythematosus Federation