Countries present:
Belgium (Flemish League), Belgium (French League), Finland, France, Germany, Great Britain, Ireland, Italy , The Netherlands, Norway, Portugal, Spain, Sweden and Switzerland .
Countries apologised:
Iceland.
11th SEPTEMBER 1996
14.00 - 20.00 Delegates arrive at Hotel Verdi in Pisa
20.00 Dinner at the restaurant Le Gourmet
Wellcome by Mrs Guiseppina Politi
12th SEPTEMBER 1996
1. OPENING
Pisa.
09.20 Professor Angelo Passaleva (Professor of Clinical Immunology and President of the Consiglio Regionale Toscano) opens the meeting.
He says that the Toscani Parliament is pleased to have the meeting in Pisa. Not only for the patients but also for the researchers, who can listen to colleagues and see new approaches and ways to solve problems like Lupus. Lupus is a social disease and prevalence is growing. Doctors are getting together in service of the patient.
Life is improving and government should have more attention to the disease and make more money available. That is what he hopes and maybe it is a dream.
But all people here are from different countries and we all face the same dream
and work on the realisation of it.
He invites the delegates at the dinner on Friday evening. It will be good for the eyes, mind, spirit and palate.
Word of welcome from the Vice-Chairman and Secretary: Rudi Hocks.
He expresses a special thank you to Elba for all her work and translations and to Lorenz Ariës who helped when Anna-Maria was in hospital to speak to Giuseppina, because of his good knowledge of Italian.
An official representative from HELIOS and REHABILITATION (from the
European Community) was invited but could not come. He apologised.
Best wishes are given to Ana Maria and Viviana from Spain.
We are sorry to hear that Colette (France) died in July. Colette was a former member
of the Executive Committee and had to leave because of health problems.
We stand up and have a moment of silence in memory of Colette.
The LFA (Lupus Foundation of America) address by John Huber is read by Rudi
Hocks and has been appreciated by the delegates.
2. REPORTS OF THE EXECUTIVE COMMITTEE
09.40 2.1. Vice-Chairman and Secretary
Report is attached.
2.2. Chairman
An overview of what has happened since 1989 is given. There was the Register, the
Newsletter Caring and Sharing, etc...
The future for ELEF is very important. We have to think about it and how we can gain more influence. A good connection with LFA could be helpful.
2.3. Treasurer
Guido hands out the separate financial report. Together with this report is the certificate of the audit carried out by accountant Lemmens.
All countries 14 on 14 give their approval on the financial report.
10.30 Coffee-Break
3. ELECTIONS
10.40 A delegate (NL) has questions about the money and non-EC members. There should be no difference between the two.
For the moment, there is no money provided for 1997 and we should all work
towards the target of having all countries accepted.
Brian Hanner presents the different tasks the Executive Committee is faced with.
Another remark from a delegate (CH) is that Executive Committee members should
be reimbursed independent from countries and related members. It is not healthy
that things depend of firms behind some members.
As Guido is not standing again for treasurer, delegates from Portugal ask his reconsideration.
Brian answers that Guido's task as treasurer has been very well appreciated and that he will support the successor.
Some delegates want point 3 behind point 5.
This has been accepted by 12 out of 13.
11.30
4. REPORTS OF THE DELEGATES
Reports of the delegates of the national Lupus Organisations are attached.
13.00 End of the first business day
13th SEPTEMBER 1996
08.45 Start of the second business day
Continuation of the reports of the delegates.
09.45
5. FINANCES
There is a fax from Mrs Stigliç indicating that the new rules will be released at the end of December. It is unclear if there will be money.
5.1. Subscription fee
ELEF needs 5.000 ECU/year to be operational for administrative work only. Apart from this the Executive Committee will probably need another 10.000 ECU/year. Portugal suggests 3 things:
1) To send material from all countries to do a Xmas market in Brussels.
2) Ask donation for ELEF and pass it on through local organisations.
3) Ask Placido Domingo to come and sing ; he will do it free of charge.
Switzerland asks, what about direct contacts with the headquarters like Sandoz in
Switzerland?
UK tells that membership fee should be minimum 50 ECU and maximum 400
ECU/member. With this indication we would raise 2.500 ECU/year.
Italy find 400 ECU too much.They are prepared to pay 200 ECU. Switzerland could
pay 100ECU. Sweden prefers a donation which is linked to a certain aim. Rudi says
that ELEF needs donation to stay alive. All countries accept 100 ECU and the larger
countries will pay 200 ECU i.e. Germany, Italy, the Netherlands, Sweden and the U.K.
Portugal would like to see a change in the Constitution. They want to vote about people with certain dedicated tasks.
During the next Annual Convention, delegates have to discuss the Constitution anyhow. One of the main reasons is that, according to the UK rules, charities need trustees.
10.15
3. ELECTIONS (Continuation of earlier point 3.)
3.1. Election of the Chairman
Brian Hanner (UK) stands as candidate.
All the votes (14/14) are for Brian Hanner who accepts.
3.2. Election of the members of the Executive Committee
The candidates are (in alphabetical order):
Kathrin Gerber-Wirz (CH)
Rudolf Hocks (D)
Frits Hoppel (NL)
Carole Lindsell (N)
Barbara O Neill (IRL)
Jean-Paul Sanders (B)
Guido (B) and Monika (S) are taking care of the practical points. They have collected
14 votes on paper from the 14 different countries.
The new elected members are (in alphabetical order):
Rudolf Hocks (D)
Carole Lindsell (N)
Barbara O Neill (IRL)
Jean-Paul Sanders (B)
Brian takes the position as chairman and wishes to thank Guido and Frits for all the work they have done during the years they were a member of the Executive Committee.
He also welcomes the new elected members. The new members express their gratitude for the confidence of all delegates.
10.45 Coffee Break
11.00
6. ACTIVITIES
6.1. Meetings of Executive Committee
The first one will be in the afternoon at 14.30 h. During the year there will be 2 more meetings of the Executive Committee.
6.2. Convention in Helsinki 1997
It is remarkable cheaper on the boat (congress package) than in a hotel. The Executive Committee will put a draft program together.
6.3. NGO with EC
Rudi doesn't yet know what will happen in 1997. We must keep in constant contact with FIMITEC. We have to attend the meetings in Brussels as a member
of the European Disability Forum (EDF). The constitution is finalised. Proposals
are given for the procedure and the General Assembly will take place in March 1997.
6.4. Publications
We all know the Register and the Newsletter.
What do the delegates think about it?
Does everybody agree with its contents? Do you want more or less?
Netherlands finds it a good start. Sweden says that we should write about exchange of experience and what is new and successful.
There will be no more Executive Committee Reports in Caring & Sharing. Brian will do a summary report of the progress of ELEF.
Rudi would like to know something about the coloured logo. All delegates find it beautiful. A copy can probably be sent to the countries (1 per country).
To whom should letters and Newsletter be sent?
The best is to send it to the official address. From there it can be distributed.
Some new publications are in project phase:
The Butterfly Traveller: A booklet with special phrases in several languages.Think about it how it can be financed. Try to find a local sponsor.
ELEF Information Sheet: like the one Lupus U.K. has in a A3-size format folded down to A5 format. ELEF would like to produce a draft.
ELEF Guide Lines: These guide lines will help other countries, which do not belong to ELEF yet, to set up their own organisation. A draft should be made.
6.5. 20th - 25th April 1998 3rd. International Lupus Patients Conference in Cancun
Reservations are made for rooms at 90 USD for a single or a double one. It is
not expensive for that part of Mexico.
We have to get further on with the organisation. This concerns the medical
talks, presentation of countries and talks on psycho-social aspects of lupus.
It is the intention to have meetings on 4 mornings each time 3 - 4 hours.
The climate is a very heavy one. This means that 3 hours of meeting and half
an hour break is more than enough.
The whole organisation is in hands of ELEF, LFA and LUPUS CANADA. We all
want to avoid that patients are excluded from the social events.
We should share the whole work of the organisation. All the local requirements
will be in hands of Mexico, the organisation of the conference should preferable be
done by ELEF, LFA and LUPUS CANADA.
There is a Barbados event in November.
LFA meets next time in Phoenix/Arizona.
ELEF is expecting offers of the national Lupus Organisation, which would like to host the 10th Annual Convention of ELEF in 1998.
12.00
7. THE ROLE OF ELEF
We do not want to change.We have no money for changes. We should move forward to appoint
an appeals officer.
ELEF has to intensify the work as a NGO with the EU.
8. ANY OTHER BUSINESS
No.
9. PROFESSOR ALBERT MORMONT
One of the great things in his life has been belonging to the Italian Group of Lupus.
The "Butterfly”, which has been a sign of disease becomes a sign of hope!
He feels that the meeting is an interesting social getting together.
The questions for the Third Conference: from bench to bed should be ... from bench to normal life.
New drugs will probably not be available in a short period of time. But there will be new ways to administrate the drugs.
Old drugs work well but have some inconveniences.
New immunological treatments are promising.
13.00
10. CLOSURE OF THE COUNCIL MEETING
Brian expresses some words of thanks to all the participants.
Jean-Paul Sanders
E. L. E. F.
European Lupus Erythematosus Federation