Report from France

First of all, we wish present to you the main lines of our association. In France, such associations are governed of different manners. The AFL+ is considered as an association of mutual aid and social action, not of charity. Our aims are:

- to exchange ...,

- to help one another ...,

- to make inquiries ...,

- to know one and another and to learn to have confidence in onesself ...,

- to make oneself known.

Before 1991, our poster was like that - with to face the Lupus- and after, like this, because we have opened out our door to other auto-immune sufferers, but only the sufferers with Lupus are in the bigger number.

Lupus is classed as a rare disease and sometimes we act by indirect methods to make our association known. First, there is the contact with other sufferers' associations or by our participation to the different meetings. Moreever, the AFL+' address is found in official address-books and we have a bulletin which comes out four times a year.

- 9th March 1996: meeting in La Rochelle, on Lupus and the pain

It's an aspect upon which one speaks very seldom.

- 30th March 1996: meeting in Lyon on Lupus, with a presentation

of a mutual Society helping the disabled and of a

review for the disabled. In the first number of

which the AFL+ was honoured of being

mentioned.

- 20th April 1996: meeting in Caen, on Lupus.

- 27th April 1996: General Assembly, held in Paris, where always

during such an event, there is an encounter

between physicians and sufferers.

Besides, we assist several meetings:

- 17th January 1996: At the Hospital Necker in Paris, a meeting has

been organised by some specialists in genetics.

They have announced the opening of a new service, named Allo-gènes. The calls are free and

an answer is given to each demand concerning the

genetic disease, as also the address of sufferers'

associations.

- 12th/13rd April 1996: presence of AFL+ to the Congress of AFLAR

(Association against rheumatism) at Aix-les-Bains.

- 28th May 1996: presence of AFL+ at the 10th anniversary of the

MAS (Associative House of the Health) at Rennes.

- 5th June 1996: presence of AFL+ to the Associations' Forum of

the Rhone-Alpes Region in Lyon.

The AFL+ has also sustained a movement of disabled workers. After our encouragement, this movement renounced to dissolve itself and decided to live and go further on.

The number of our ordinary members is changing because we must regularly take out of our card-index the names of the people after a year of no-payment. Actually we have 630 members but none the less we receive a lot of inquiries upon lupus, the "lupus-like" and some other auto-immune diseases, more rare still, as the pemphigus or the disease of Wegener.

This year the AFL+ has lost six delegates, Region-responsibles, because of the departure -in so far as responsible- or of disease. It remains now 9 delegations. In the other hand it has strengthened its "Point-Contact" net, from 6 in 1995 to 19 in 1996. Each "Point-Contact" is responsible for a Department, but there is one for Guadaloupe, one for Algeria and another for Morocco.

By elsewhere we are in contact with the association Envol for the European children of which Paul Newman, an American actor, very known, is the Honour President. It will welcome, from March 1997, some young sufferers for a fortnight's stay entirely free. On one side the medical expenses will be covered by the social institutions of each country. On the other side the transport charges and so on will be paid by an European and North American mecenat.

The ideas don't lack to try of fundraising but it's very difficult to find sponsors except in our case the Nuclear Center of Fessemhein in Alsace.But for having more money we sell little things such as these small wolves or these pearl-butterflies.

Andrée Hamon