We still have our three meetings a year.
- In March: Skinproblems (a cosmetologist gave advice on camouflaging skin and hair
loss problems).
Celebration of the 5th anniversary of our Association.
- In May: National Information Day at the University of Liège.
Our guest was Professor KAHN from the Hopital Bichat in Paris.
He is a rheumatologist specialising in lupus as well as being an historian in
medicine.
He gave an unusual talk about The History of Lupus in History and
Literature.
- In October: The topic will be "Lupus and kidney involvement".
Number of members: 500 of which 380 are lupus sufferers; the others are relatives and doctors. (Total population: 4 500 000).
Several articles have appeared in the medical press: the newspaper for generalists and in magazines adressed to gynaecologists and pediatricians.
An important pharmaceutical firm has published a full periodical on lupus.
All these articles have been compiled with the assistance of our association who gave all the relevant information.
Since May, we have been included in the Service d'aide aux personnes handicapées, which is a service run by the Red Cross for disabled people; it takes part in the European information network called Handynet which is a data base of technical assistance for disabled.
They are mainly the subscription fees of our members (subscription fee: 300,00 BFR).
Some of our members give more; on donation of 1.000,00 BFR or more, it can be deducted on income tax.
Each year, we manage to have additional funds through different organisations:
- in 1995, we received 300.000,00 BFR (7.500,00 ECU) from the national lottery.
- in June 1996, we received the profit made from a football match played by doctors and
students at the University of Brussels.
For the organisation of the Annual General Meeting, we are being sponsored by pharmaceutical firms.
In 1995, the money left after having payed our running costs was 500.000,00 BFR (12.500,00 ECU). We decided to give money to research.
The reason why we made this decision was that one of our main characteristics of our group is a very close collaboration between our association and doctors. Three specialists from the different universities are active members. They are doctors with lupus patients as well as being researchers. At the moment, two of them are working on an important study in vitro about Interleukine 12 which could be able to stop the prodaction of antibodies.
There is no progress in our action to obtain a special status of chronic disease. The Ministry of Health and Social Security has created a special commission to establish a list of diseases which have higher reimbursement of medicines and medical examinations. Two years ago, they spoke about adopting a similar system as the French one. Unfortunately this plan has come to nothing for two reasons:
- the Social Security deficit; no question of increasing expenses.
- the low number of lupus patients; not sufficient to be a pressure group.
For the same reasons, there is a tendency to reduce the number of officially recognized associations; we recently had great difficulty in obtaining the renewal of tax immunity of donations (one reproach made by the administration is that we have made no preventive matters).
In this context, we think that more than ever the role of our association is to help the patients and especially new sufferers by giving the maximum information and patients experiences.
Anne Fayt
E. L. E. F.
European Lupus Erythematosus Federation