13 - 19 November 1995, Estoril - Lisbon, Portugal
Countries present:
Belgium (Flemish League), Finland, France, Germany, Great Britain, Iceland, Ireland,
The Netherlands, Norway, Portugal, Spain, Sweden and Switzerland and United Kingdom.
Countries apologized:
Belgium (French League), Israel and Italy.
13 November 1995
18.00 - 20.00 Delegates arrive at the Hotel Palacio in Estoril
20.00 Dinner with all delegates present in Caiscais
Welcome by Mrs Kathleen Valente
14 November 1995
1. OPENING
The official welcome expressed by Rita Andrea is an appeal for the exchange of ideas and for the improvement in the quality of life. A lot of efforts have been put into the organisation.
09.30 Words of welcome from the Chairperson of the Council Meeting: Rudi Hocks.
Dr. Charana, President of the HELIOS II Programme in Portugal and National Secretary of REHABILITATION welcomed all delegates and wished us much success with the Conference.
A very hearty welcome is given to Professor Takao Koike from Japan and Professors Robert Lahita and Howard Steven Shapiro, both from the USA.
Question by Peter Bakker (NL): he would like to receive the scripts from the medical lectures. We will all get a copy of the review.
2. REPORTS OF THE EXECUTIVE COMMITTEE
09.45 2.1. Vice-Chairman and Secretary
see separate report
2.2 Chairman
NGO meeting in Brussels: they are rather vague. There are about 50 to 60 meetings and there is a split up. Unfortunately no minutes nor agenda is handed out prior to the meeting.
2.3 Subscription fee
Switzerland suggests to send money at one certain time.
Some countries need an invoice: E.L.E.F will send an invoice!
Starting in 1996: 1 January invoicing with payment terms 30 days. Outstanding subscription per country mentioned (of previous years).
100 % approval by all countries.
11.00 Coffee-break
11.30 Talk by Prof. Lahita
There are exciting developments going on in the USA. They have about 48.000 members now. Lupus Foundation of America started in 1966 and they will merge with the Lupus Association of America to come to a total of 80.000 members.
A marketing study shows that some 1,5 to 2,0 million people in the USA suffer from Lupus.
They would like to do a comprehensive epidemiological study in the world. The international associates would like to expand their contacts with Europe, Japan and Australia.
How is Lupus Foundation of America organised?
Formerly, there were Lupus patients at the board of directors. This is to a lesser extent nowadays.
Fundraising is implemented at a directors programme. Directors are elected by number of votes.
There are 95 chapters with between 300 and 10.000 members.
86% in the US knows what Lupus is = public awareness!
John Huber has a full-time staff of 8 people.
Membership fee is 3 USD.
How do they reach the general public?
They have PR consultants, advertising, TV advertising nationally (they call it marketing blitz). Being a charity they get discounts on the normal rates and also free TV time!
In July 1996, there will be a national convention in Boston. E.L.E.F. will receive an official invitation for this event.
To get the list of films available call:
(1) 301-670.9292 Washington DC Office
ask for educational
marketing
PR
3. REPORTS OF THE DELEGATES
Switzerland: see separate report
Sweden: see separate report
Norway: see separate report
France: see separate report
The Netherlands: see separate report
Ireland: see separate report
13.00 End of the first business day
15 November 1995
09.30 Start of the second business day
Iceland: see separate report
Finland: see separate report
Spain:
The organisation is mainly in the hands of women: there are 22 of them and only 2 men. Only members are allowed.
They try to have more provinces involved in the organisation.
An organigram (fig. 1) is enclosed.
In the Interdisciplinary Group (fig. 2) 2 persons are payed by the Spanish Lupus Association.
In December 1995, they will have their first national doctors group.
From a psycho-social problem to complete rehabilitation (fig. 3).
They have about 300 members.
Portugal: see separate report
United Kingdom: see separate report
Germany: see separate report
The countries do not need to send in their reports for the April issue of Caring and Sharing. The April issue will be devoted exclusively to the Annual Convention which took place in Portugal.
A suggestion has been made to mention not only the registered number of members per country but also to list the total population.
If there is a problem with the Register, make the change in the Register and let Rudi know.
4. FINANCIAL SITUATION
Guido is presenting in brief the Annual Balance and Statement of Income over the year 1994. An official auditor has carefully checked the bookkeeping and written down his conclusions.
35 - 40 % of the incoming money is from the European Community.
60 - 65 % we have to find ourselves.
Subscription fee:
Do we want to ask more money to the different member countries?
Proposals from UK: Sliding scale = according to the number of members.
Belgium: 1 ECU/ 10 members with a minimum of 50 and an indicated maximum of 150 ECU.
Sweden: They lose members because the first year patients are associated with Lupus and the second year they belong to the Rheumatoid Association.
Germany: Postpone decision. If there is another idea, please discuss with your Board and let then Rudi know what has been decided. In PISA we will vote according to the proposals.
UK: An invoice will be made for 50 ECU for 1996.
On the invoice will also be mentioned:
DONATION IF WISHED: ..................
11.00 Coffee Break
11.30 Continuation of the Council Meeting
5. PISA AND NEXT ANNUAL CONVENTION
Rates of hotel and accommodation have been distributed to everybody.
Do we want a whole day of business meetings?
No medical talks on Saturday.
We need doctors talking for patients!
For some delegates there is a conflict situation where they can not spend several days for the meetings while they would rather be at home and take care of their family.
Some other delegates would like to reduce the business meeting time by handing over the reports from the different countries prior to the convention.
Some other delegates find the reports important and want to see an exchange of ideas during the convention.
Spain indicates that Lupus is not accepted officially in all countries.
Conclusion: we need to have a Council Meeting.
Business Meetings in Pisa:
2 half days on Thursday and Friday
half a day optional medical talks on the Saturday
Election of the Executive Committee in 1996.
Prior to the Pisa meeting, a nomination list has to be prepared.
If officers would like to stand again, they have to indicate this.
New ones have to apply.
Votes will be given in Pisa.
Annual Convention 1997.
Do we want one?
Every country agrees.
Where?
Finland has offered to host the Convention.
6. BUDGET
There will be three Executive Committee Meetings and one Annual Convention. We hope to get subsidy by the European Community.
7. 3TH INTERNATIONAL LUPUS PATIENTS CONFERENCE
This Lupus Patients Conference will take place in Cacun, Mexico in 1998
It is accepted by all countries.
8. ACTIVITIES OUTSIDE EUROPE
All countries agreed to go on sending our Newsletter to the Lupus organisation outside Europe, but we would like to get their Newsletters as well.
Brian (UK) refers to the last Executive Committee Meeting and the topic: Eastern Europe. See report made by Jean-Paul.
First of all we have to be ensure our own growth!
9. ANY OTHER BUSINESS
Lupus UK is prepared to produce more copies of the Newsletter. They will print and send it to everybody, free of charge.
Monica (S) suggests to make a list and send it to the people on this list.
Conclusion: all countries accept the kind proposal from UK.
A special card (MEDICARD, SMART CARD) could be made with all the relevant medical information of the patient.
For certain countries, this kind of card does not exist and is probably to early. This topic can be discussed later.
13.00
10. CLOSURE OF THE COUNCIL MEETING
Jean-Paul Sanders
E. L. E. F.
European Lupus Erythematosus Federation