First of all I would like to say sorry that we didn't have a report in No: 3 of "Caring and Sharing". But as you all know it doesn't allways go as you plan. Once again I'm SORRY !!!
So actually it's a whole year since the last report from us. When you receive and read this report, you will all see that it has been busy, and that we will continue to be busy, with the LUPUS work in Norway.
(NRF = The Norw. Rheumatism association)
First of all I will try to explain some misunderstandings in the report from the annual meeting in Münster. It says that we have some financial problems because we belong to NRF, and that the communication with them is not very good. That is far away from the truth. Maybe we had some starting problems, but that is nearly all over now. Today we have a good dialog and very good co-operation with them. They take us seriously. I will try to explain briefly how and why we work with them:
WHY DO WE HAVE A LUPUS WORKING GROUP WITHIN NRF?
(Consists of 3 elected LUPUS-members and 1 person from central
NRF)
Since our first General Assembly in May 1994 have we worked with the following:
The foundation of:
"SOLVI ELIN VAGSTAD'S MEMORIAL FUND FOR SLE-RESEARCH"
We have our own page with our own LOGO in NRF's magazine "REVMATIKEREN", which is published 8 times per year. This is an interesting magazine with a lot of practical information for chronically sick people. Information about good discount agreements, as f.ex. Insurance company, Oil company (petrol), Hotels, etc. etc.
As already mentioned, we have observatory place on NRF's General Assembly. We were represented by one person for the first time in 1994.
The translater we have established connection with, for translation from English to Norwegian, is a nice English woman with LUPUS called Carole Lindsell, married to a nice Norwegian man. They live half the year in Norway and the rest on Gran Canaria. She gets her postal costs covered by our LUPUS budget.
Internationally we have been represented by one person at the LUPUS-conference in Lisbon, Portugal, Oct. 1994. We were invited by the FANTASTIC Portuguesian LUPUS-organization. Which is perfectly lead by the not less FANTASTIC persons Rita and Rosa, and all their fabulous members. Supported by the above mentioned group and our own budget.
We also participated on ELEF's annual Meeting in Mhnster, Nov. 1994. Supported by our own budget.
Joined also the Second Int. Patient Conference in Jerusalem, Mar. 1995. Supported by some Medical Companies and our own budget.
My international deputy is Carole Lindsell. She and I will join the annual meeting of ELEF in Portugal in November 95. Carole was chosen because of her background in the English language, since the official language within ELEF is English.
Now we have started to use our own letters and envelopes. We have our own LOGO on top of course + a small NRF logo to show that we also work for and with them.
The LUPUS-working group have sent a letter to NRF's Law-comittee to ask for the possibility of a combined membership. Many of the members within NRF find it a problem not being able to be a member of both a local Rheumatism and a county LUPUS group. We have challenged the Law-comittee to find a reasonable and easy solution to this problem.
Every 3 months we receive lists over the registrated and paid lupus members, from central NRF, as agreed.
There have been founded 3 new LUPUS-groups since the last report. So now we have a total of 8 county groups, which covers 10 of the Norwegian 19 counties. Also we have 4 places in Norway where people with LUPUS work closely with the county/local Rheumatism groups, because they are too few to make their own county LUPUS-group. Some of the county/local Rheumatism groups are very co-operative, and some are not. The final conclusion is that most of them, both central, in the counties and local are very positive and helpful to our work.
The 1st registrated county LUPUS-group and the 4th one had a meeting together on the 1st of October 1994. Invited and supported by them. 1 representative.
Invited to the foundation of the 6th county LUPUS-group in November 1994. Supported by our budget. 1 representative
Invited to a Daily Seminary about LUPUS and SJØGREN 4th of March 1995. In Steinkjer. (North of Trondheim) Supported by our budget. 1 representative.
Organisation course part I, Autumn 1994, and part II, Spring 1995. Arranged and supported by central NRF. 1 representative.
Political Health Course February 1995, also arranged and supported by central NRF.1 representative.
County Conference June 1995. Delegates from all the 19 Rheumatism county organisations + 2 representatives from us. Supported by central NRF.
Dental care conference spring 1995. Supported by central NRF. 1 representative.
Council meeting May 1995. We were not able to join that meeting.
Weekend conference about LUPUS Sept. 1995. Arranged by the last founded county LUPUS-group. Supported by our budget. 1 representative
We have had 11 board meetings. One board meeting was cancelled because of the sudden death of one of the members in the LUPUS-working group. The board meetings are held in central NRF's office in Oslo, with Bjrn Jensen from central NRF.
We have ordered 1000 lottery tickets, for sale. To support the yearly Rheumatism Lottery, and to earn some money for the LUPUS-working group itself.
(Within central NRF)
The budget for 1996 is based on the same figures and settings as for the year 1995.
The budget is made under the condition that we get the same contribution from NRF in 1996 as we got in 1995.
Future plans for the LUPUS-working group within NRF from 22 of Oct. 1995 until our next General Assembly, which has to be held not later than 5 months before central NRF's General Assembly in 1996.
These were the LUPUS working-groups activities, but we are not the only ones that have been working. Our established county LUPUS-groups are also very active. I will mention some of the things they have been doing:
Since our last report we have registered have about 30 new LUPUS members within NRF. These new members have most probably enrolled because quite a lot has been written about LUPUS itself lately. Several people with LUPUS have been interviewed by some of the biggest weekly magazines, or local newspapers. Both big and small ones. So the conclusion is that we have to use the media much more to promote ourselves, and to get hold of new members.
The program for our General Assembly 21.-22. October 1995 will be:
This was all for now!
We still promote ourselves positively and concentrate on the positive aspects and try to forget whatever is negative!
Best regards from
Linda Knudsen
Norway
E. L. E. F.
European Lupus Erythematosus Federation