Present: Guido Carron (GC), Brian Hanner (BH), Rudolf Hocks (RH), Frits Hoppel (FH), Jean-Paul Sanders (JPS) and Prof. Matthias Schneider (MS)
1. Opening: the meeting started at 14.35
2. INTERNET:
E.L.E.F. is on the WWW (World Wide Web) of INTERNET since early January 1996.
It is on the server of the University of Düsseldorf. We all thank Professor Schneider for the efforts and work he has put in this project. We are even more grateful knowing that it is free of charge!
The actual Register and the latest issue of our Newsletter Caring and Sharing are accessible. Each time a new Caring and Sharing is issued, it will replace the former one. A member of Prof. Schneiders staff is loading the data into the system at this moment. In May RH will be trained to be able to put the information in INTERNET format. It is very nice to be on the INTERNET and E.L.E.F. is extremely pleased with it. Later on it will be possible (hopefully) to put the information in as a file. In this respect, people can make a print out of it.
On the home page, the number of sufferers E.L.E.F. is representing should be mentioned.
BH suggests to make a matrix in the register. This gives the opportunity to evaluate the changes from e.g. 1990 - 1996.
BH calls the Register a year book (available in A5 format for the first time) and it will be completely printed in the future. It will also be revised once per year.
MS: it would be good to have something about Lupus and an Index.
He will prepare and send the information on Lupus.
RH will produce an Index for the issue of the Register.
In a later stage (half a year), BH will copy C & S from INTERNET. Then 10 copies will be sent to each country.
3. 7th Annual Convention in Estoril:
We have to make up the final budget for the convention and for the Executive Committee meetings.
- English language is a requirement for the delegates.
When we send out the invitation for the 8th Annual Convention, the next text will be written:
"It is preferable that at least one delegate from each country be reasonable professioned in English."
- A list of all the people attending will be made in the future.
4. 8th Annual Convention in Pisa.
One item on the agenda could be: Discussion about the next 10 years of E.L.E.F.
According to the programme of Prof. Bombardieri, the scientific conference is set.
MS suggests to ask other physicians from other countries to give a presentation. The best thing is to have doctors who are aware of E.L.E.F. and have interest in the people in their country.
We could start with some medical talks for the delegates when the other medical conference is over and the doctors are available to come.
We need a meeting room for about 40 people and have to offer it to the Italians.
A room in the Conference Centre will be a good choice. The best is to be as close as possible to the doctors (where they have their meeting).
RH will write a letter to all countries. We need 4 speakers in total. They could give their topics and E.L.E.F. will make a choice.
It would be interesting to have at least one person from Finland (Annual Convention Host Country in 1997!).
Ask the organisers to plan something for sightseeing: Pisa, Luca, etc...
5. NGO meeting in Brussels
FH reports that it is uncertain if Helios II will continue. The decision will be made next time.
It is also possible we do not receive money any more. There is short funding and 1996 is the end.
It will be wise to take into consideration that there will be no funding. RH and FH will go to the next NGO meeting on 21 February.
RH will phone FIMITIC to know about the money for 1996.
6. Finances
We still get the bank charges.
We have to find a way to make it cheaper.
Can E.L.E.F. have a VISA card number? BH will ask.
The invoice proposal from BH has been accepted.
GC: Is Israel still (associated) member?
MS: for Israel, send the invoice to Prof. Schoenfeld with a letter: "Would you kindly forward this invoice for payment (GC will do so).
7. Annual Report
Do we need to make an Annual Report? No
8. Lupus Foundation of America
RH wrote a letter to LFA in October 1995, but did not get an answer. In January 1996 RH phoned John Huber from LFA and asked to fax the letter he sent before again. Up to this moment there is no fax.
During the phone call John Huber suggerted that LFA was thinking of organising an International Lupus Patients Conference in 1997 in America. RH told him to have International Lupus Patients Conference in America would cause the problem of not having as wide a range of doctors at this Conference as one could have if this Conference would take place concurrently with the Sientific Conference in Cancun in 1998. He will think about this problem und discuss this with RH.
Annual Convention of LFA in Boston 11 - 13 July 1996.
RH will write or fax a letter to suggest a presentation of E.L.E.F. and discussions. Who will attend the meeting from E.L.E.F.? RH can go. BH will go anyhow. JPS has the possibility as well. It could be nice to have even two persons there.
9. Third International Lupus Patients Conference 1998 in Cacun/Mexico
There is a connection with point 8. A letter from Prof. Alarcon-Segovia asking how many patients will take part in the conference? RH will reply that we shall let him know.
MS asking BH: what about Dr. Graham Hughes?
Basic question to members: who is interested?
We shall collect names and send the information.
MS: What are our aims? This is in connection with LFA. They have experience in organising patients conferences.
10. Register
This is OK. See point 2.
11. Caring & Sharing
There are two articles from BH and also some articles sent in by The Netherlands, Ireland and Iceland.
JPS will make a summary of what Spain does. He will also send some more text about Belgium.
BH will send a diskette to RH with a medical article. RH asked again for the information of the professors. The deadline is end of the month.RH wants the Newsletter out before the end of March.
From FH there will be in C & S a Press Release of:
"Disabled persons' status in the European Treaties: Invisible Citizens"
12. Miscellaneous
What to do with other lupus organisations from outside Europe?
We would like to have an exchange of Newsletter.
We also could offer them a status of "Associated Members".
Therefore we would have to change the constitution.
We will discuss this subject in Pisa. For the next meeting, we have to put on the agenda:
Future planning (BH)
13. Closure
The meeting was closed at 17.15
Jean-Paul Sanders
E. L. E. F.
European Lupus Erythematosus Federation