History of Lupus Europe

A meeting took place in London during April 1988 when delegates from eight European
Lupus groups attended.
The countries represented were: Belgium, Finland, France, Germany, Ireland,
the Netherlands, Switzerland and United Kingdom
.

The idea of this meeting was to get to know each other, to exchange experiences,
and to learn from each other.

Everybody present agreed to meet again the following year in Leuven/Belgium and it was
there in 1989 that it was decided to found the European Lupus Erythematosus Federation:
ELEF
.

The members of ELEF are the national organisations and other properly-accredited Lupus groups
in Europe.
At this moment there are 20 countries with 22 organisations and about 35,000 patients represented.

In 1990 ELEF became one of the NGO's -non-governmental organisation- who advised the European
Union in the field of disability.

In 1991 ELEF made a Europeanwide survey on the disease of Lupus.

The First International Lupus Patients Conference in 1992 which took place concurrently with the
Third International Scientific Conference on SLE was organised by ELEF.

The Trustees of ELEF were centrally involved in the promulgation of World Lupus Day
on May 10, 2004
in New York and World Lupus Day is now celebrated annually on this date.

ELEF has worked ongoingly to encourage Lupus Groups internationally to recognise
October as Lupus Awareness Month every year.

There are contacts worldwide with other Lupus organisations.
A magazine is published during December of each year and a regular Newsflash keeps
members informed of announcements and events.

After 19 years, the Council, the governing body of ELEF, has voted to change the name of the
organisation to LUPUS EUROPE

This decision was taken at the 19th Convention of ELEF during the Council meeting on 1
1th September 2008 in Palma de Mallorca, Spain.
All the delegates voted for this change as they had the feeling that the new name LUPUS EUROPE
pronounces strongly that we are uniting and caring for Lupus patients throughout Europe.

Following agreement with the Charity Commissioner the new name came into effect at the
closure of the 19th Convention on 13th September 2008.