E. L. E. F.
CARING AND SHARING, Newsletter 4
Report of the Vice-Chairman and Secretary

Please let me give you the report of my activities for the last 12 months.

I published the Newsletter "Caring and Sharing" Nr. 3 ­in May 1995­ and Nr. 4

­in October 1995­.

When you compare the last two Newsletters with the first two, you will have noticed that there is a big difference, not only in the layout but also in the quality. Unfortunately we never managed to have a report of all our member countries in one issue. There were always one or the other country missing. My wish would be for the future to have 16 reports in one issue, possibly it will come true one day.

On the 19th of January 1995 I went to Brussels to have a talk with Ms. Bedlington of the HELIOS II Expert­Team.

There I learned that Eric Howard the former Chairman of the Executive Committee changed the sector partner from RI­ECA ­Rehabilitation International­ to FIMITIC ­International Federation of Disabled Workers and Civilian Handicapped­ in 1993 without informing the members of the Executive Committee. The reason for this change is not known to us.

I asked Ms. Bedlington if there would be any chance for ELEF to receive money from the EC for 1994 because we have not been aware of any deadline for the application in 1994. She told me she was sorry about our situation but there would not be any money left but for 1995 she was able to tell me that ELEF would get a subsidy of ECU 9,800.­­.

I also discussed the problem of discrimination of lupus sufferers at the work place. She advised me to get into contact with Mr. Exell of the ETUC ­European Trade Union Corporation­ in London and discuss this problem with him.

On the 9th of March 1995 while beeing on a private visit to the U.K. Brian and I had a talk in London with Mr. Exell of the ETUC. We discussed the problem of discrimination of lupus sufferers at the work place. He pointed out that this problem would not be a specific problem of lupus sufferers but for all people with a hidden disability, i. e. people with a disability which is not seen on first sight. His suggestion was to organise a conference on this problem with members of the trade unions, employers' associations in cooperation with other self­help organisations for hidden diseases.

On the 28th of March 1995 I attended the Second International Lupus Patients Conference in Jerusalem. It was very poorly organised. The plan was that it should last for two days and that there would be three social events. The fact was it lasted one day only and the participants should not take part in the social events. After intervening it was decided that the participants coming from outside of Israel could take part at the social events. Please let me come back to this subject later in my report.

On the 18th of October 1995 I had a meeting with Ms. Stiglic of FIMITIC in Bonn/Germany discussing the application for subsidy from the EC for 1996. She informed me that it is not sure if there will be a HELIOS III-Project for the years 1997 and onwards or if there will be a similar project at all.

I filled in the application forms for funding of two projects of ELEF in 1996 to the EC and sent them to Mr. Wehrens, Dept. DG V-E-3 of the EC in Brussels in time.

Quite a lot of letters were answered and written to members of ELEF, medical professors and other persons asking for information of different kinds.

Numerous telephone calls were made and faxs sent in- and outside of Europe, especially calls with Rita concerning this convention.

Let me come back to the Second International Lupus Patients Conference in Jerusalem. On the 30th of March 1995 an informal meeting of the participants coming from outside of Israel took place at the hotel. 15 representatives of the following countries were present: Australia, South Africa, Canada, Trinidad & Tobago, Italy, Norway, Portugal, U.K., and Germany. The delegates

agreed that representation should be made by Rudolf Hocks and Brain Hanner to the organising committee of the 5th Sientific Conference on SLE in Cancun/Mexico in 1998 for support group and patients input to the organising of the third International Lupus Patients Conference. In Jerusalem I got into contact with Professor Alacorn­Segovia, the Chairman of the Conference in

Mexico and talked with him about this subject. Also I wrote a letter to him concerning this matter a fortnight ago.

Rudolf Hocks