EUROPEAN LUPUS
ERYTHEMATOSUS FEDERATION

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Hello, and Welcome to the home page of ELEF !


Survey

logoWLD _smsm.gif (7581 byte)May 10th, 2004   
http://www.worldlupusday.org

What is Lupus?
History of ELEF    |    Aims of ELEF    |     ELEF Constitution

ELEF addresses (Register)

Official Addresses and further informations about ELEF - Executive Committee and Correspondents - and the members of ELEF, the national organisations of Lupus Groups in Europe.

"Caring And Sharing"

The Newsletter of ELEF

ELEF Conventions
notes on the conventions, reports from countries, photos..

International Events

The Fifth International Lupus Patients Conference will be held in USA
New York City  9 - 13 May 2004

Last update 13-01-2004
ELEF, Europe
Copyright 2001-200
4
Maria Teresa Tuccio
 

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History | Aims | Constitutions | Register | Newsletter | Conventions | Events


WHAT IS LUPUS?

So few have heard of it, yet worldwide it's seen as more common than leukaemia muscular dystrophy and multiple sclerosis. 90% of the patients who suffer from Lupus are female of childbearing age. Even young children can be affected by lupus.

Lupus is a condition whereby the body's defence mechanism goes into overdrive and starts to attack itself. The symptoms are many and varied, and the illness often seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the General Practioner or consultant is alert to the possibility of lupus.

LUPUS IS NOT CONTAGIOUS

Lupus can be triggered:

- at puberty - during the menopause
- after childbirth - after viral infection
- through sunlight - as a result of trauma
- after a prolonged course of medication

THE SYMPTOMS

These may include:

- extreme fatigue - joint and muscle pain
- eye problems - depression
- mouth ulcers - facial or other rashes
- hair loss - anaemia
- possible involvement of the kidneys, the heart, lungs and brain - miscarriage (especially regarding Hughes Syndrome)

THERE IS NO CURE...

People diagnosed normally remain in medical care, with continuing medication. Many symptoms have less impact as a result, but side effects often occur.

Lupus adversely influences the lives of sufferers, the family and their friends.

SLE - systemic lupus erythematosus

....hard to say - harder to live with....

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History of ELEF

At the end of 1987 Eric Howard, former Director of Lupus UK, invited the national organisations of Lupus Groups from 8 European countries to a meeting in London. In April 1988 this meeting took place in London and the delegates of the Lupus Groups from the following countries took part: Belgium, Finland, France, Germany, Ireland, the Netherlands, Switzerland, 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 again.

It was in Leuven/Belgium in 1989 that it was decided to found the European Lupus Erythematosus Federation -ELEF-.

The members of ELEF are the national organisations of Lupus Groups in Europe. At this moment there are 17 countries with 19 organisations and about 25,000 patients represented

Belgium-FL. Belgium-FR. Finland France AFL+
France LF Germany Hungary Iceland
Ireland Israel Italy Malta
Netherlands Norway Portugal Spain
Sweden Switzerland United Kingdom

The aims of the ELEF you may read on the following text. According to these aims ELEF in 1990 became one of the NGO's -non-governmental organisation- who advise the European Union in the field of disability.

In 1991 ELEF made a European wide 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.

There are contacts worldwide with other Lupus Organisations.

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Aims of ELEF

  1. To collect information on all aspects of Lupus, both in the medical and sociological areas of the disease.
  2. To assist in improving the knowledge of the disease for people with Lupus and members of the health, welfare and medical professions.
  3. To encourage and/or undertake surveys and research projects related to the disease, and the publication of the useful results of any such research.
  4. To promote awareness of the disease throughout Europe and the Support Groups that are available for sufferers in each member country.
  5. To sponsor and/or promote European symposia on all aspects of Lupus.
  6. To gain representation on any European or International body whose interests could be of benefit to members of the European Lupus Erythematosus Federation.
  7. To assist with the establishment of Groups in other European countries where at present they do not exist.
  8. To do all such other lawful things as are necessary for the attainment of the above objects.

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Last update 13-01-2004
ELEF, Europe
Copyright 2001-200
4
Maria Teresa Tuccio
 

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History | Aims | Constitutions | Register | Newsletter | Conventions | Events