Present: Guido Carron (GC), Brian Hanner (BH), Frits Hoppel (FH), Rudolf Hocks (RH), Prof. Matthias Schneider (MS), Jean-Paul Sanders (JPS)
the meeting started at 14.30
were handed out to everybody.
7. The ELEF bank accounts: there will be no charges. This has been accepted by Barclays as sheltered under the LUPUS UK umbrella. See addendum 1 (letters and documents from BH)
10 copies of the next issue for Belgium. The postage is very high (12 DEM). It will be probably necessary to ask assistance from each country (See 10.3).
Other solutions are possible.
Most of the delegates will arrive on the 13th and leave on the
19th. RH keeps track of all persons.
Invited physicians are: Prof. Lahita, Prof. Schneider, Prof. Shapiro,
Prof. Koike and Prof. Hughes.
Council meeting will be on the Tuesday morning.
Country presentations on the Wednesday morning: given time 20
minutes per country.
Rita will propose the final programme.
Room rate is 18.000 PTE.
Each delegate will pay its own meals.
There is a report from Sally.
The Conference was very disappointing for patients
At the very last moment, ELEF has been asked to present a report.
2 social events were planned for patients and 3 for doctors. RH had to fight to get tickets.
The result: there was an informal meeting on the Thursday. RH
has been asked if he could help with the next organization.
1997: Mexico - Scientific and patients conference at the same
time. RH has been in contact with the local organizing professor
already. He will sent report to every one.
The whole conference did not happen as it was planned and, important,
a lot of costs were involved!
MS suggests that it is necessary to tell what we want. We should
get in contact with the Self Help Group in the USA to arrange
certain things with them. RH will write them a letter.
We have to have a role in organizing the next meeting.
Nobody is doing anything on a worldwide basis. Therefore it is necessary that RH will get in contact with the USA.
RH will circulate C. & S. on a wider basis together with all the "aims" which were given by BH.
BH will write a letter to Graham Hughes concerning the Israel Meeting and to tell him that something should be organized with help of ELEF.
April Meeting: instead of April 27, the meeting was postponed
by 1 day. So, nobody could go on the 28th.
RH will arrange another meeting with Mrs Stiglic
Letter from Andrée Hamon (France), which was sent to all member countries. RH will write a friendly letter to let her know that all countries receive a free ticket for one delegate.
What are the special topics?
RH will contact Mrs Bedlington (he will also send C. & S.).
What are the deadlines? Do we work with the same rules?
Helios II is still on in 1996.
We should try to have the budget ready for the next meeting.
Charity Know-How is having money. If we have a project, we can
get money.
ZAGREB will get the newsletter and they have to send their needs
in. They have a lot of other problems there.
BH suggests that we should arrange certain points according to a clear planning: i.e. How would ELEF like to continue?
in the interest of all Lupus patients in Eastern Europe:
We need a brochure about ELEF. We should make it with the intension
of getting in contact with Eastern European countries.
We should ask for money to make the brochure!
It will be a long way, because in these countries, doctors do
not tell their patients what is wrong with them. We have to get
this awareness step by step.
We should make some recommendations of what the Exec. Comm. wants
to discuss in Lisbon: some examples:
Hidden disability and discrimination at work place.
Suggestions are conferences with trade unions, employees and contacts
with other groups with hidden diseases.
MS raises the question how far an employer will go for 1 person
in his organization (frequency of Lupus is rather low).
It will be an enormous problem to do this on a general basis.
MS continues in saying that his experience is that information
is not going from the top to the bottom. He has experience in
educating patient about SLE in 4 evenings with groups of 15 patients.
MS will put his experiences in a report. In Germany this education
is already accepted in the whole country.
The 3.000 ECU from RI-ECA: nothing yet. FH will phone to know where the money is (money was first transferred to the Dutch bank account, but was then sent back).
Already paid: Great Britain, Italy and Spain.
RH will send a letter to get payments in. There will be a demand
for an increased subscription (= fee for postage and other expenses).
Cheque books for GC: still nothing.
Bank charges which have been put on the account should be cancelled.
Should the financial reporting be in GBP?
Invoicing each country: "Note to be paid"?
Since LUPUS UK sent book marks to 500 libraries and book shops, they got 500 new patients in 2 months.
Grobbendonk, 13 September 1995 at 17h00.
Jean-Paul Sanders
E. L. E. F.
European Lupus Erythematosus Federation