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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 23 countries with 25 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.

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 11th 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.