Please let me give you the report of the activities of the Italian SLE Group. We couldn't participate in Portugal last year, then I will summarize for the 1995 and 1996. This year has been the 9th anniversary of our Group.
During the last few years, we achieved an enormous amount and we begin to be known in Italy; we often are invitede with other associations to take part at various social and medical talks. This is very important result because it is thought that there are approximately 50.000 Lupus sufferers in Italy. It is useful to remember that the entire population of Italy is about 50 millions.
Our Group has a membership of about 2.500 and the number is always increasing. There are local branches operating in Brescia, Genova, Ancona, Cagliari,Palermo, Padova.
Prof. Alberto Marmont is the Honorary President of our Group. The chairperson of our Group is Mrs. Giuseppina Politi that some of you surely remember from previous meetings. Ten years ago she began to call other persons suffered from SLE, previously contacted by her doctor. They asked English Group's advice and started the Italian Group. A Board of Management of five people supplies for the normal run of things.
In the last two years we published five issues of our magazine ICARO:
Nr. 15 - in November 1994
Nr. 16 - in March 1995
Nr. 17 - in July 1995
Nr. 18 - in February 1996
Nr. 19 - in July 1996
we are preparing the Nr. 20 for November1996.
ICARO is very well received also from doctors. It gives information about happenings within the groups and announces forthcoming events. It gives an account of our meetings and occasionally it contains the reports of the medical conferences in our workshops. There is a Question and Answers Section, compiled by our medical consultants, and a Live Histories Section where the Lupus patients may talk about their adventures. Interesting articles appeared in Lupus magazines of other countries sometimes are translated and published in ICARO.
We have four Lupus publications in Italian language:
"Systemic Lupus Erythematosus": 31 pages, an Italian translation of
"Lupus a guide for patients" compiled by Prof. Graham Hughes
from Lupus Clinic in London, in Italy edited by Prof. Dall'Aglio
from University of Parma;
"Obstetric and Gynaecological problems in SLE": a 34 pages
booklet which contains the proceedings of a refresher course held at
Parma University in October 1992;
"LES": a three pages brochure describing Lupus and the Italian SLE
Group;
"LES": a one page pamphlet which informs about the Italian SLE support Groups.
We have just published a new booklet "L.E.S.", a useful guide for lupus patients. Prof. Raffaella Scorza, from the University of Milano, has compiled this book. Through about 50 pages it gives an overview of Lupus, its symptoms, clinical tests and treatments.
26th November 1994
Genova and Liguria's Regional Group starts officially. Prof. Marmont from the S. Martino's Hospital in Genova gave a lecture on "SLE: past, presence and future". In this group two local meetings every month take place at the main hospital of the town. The first meeting takes place every first Thursday and it is open to patients, relatives, friends, physicians and supporters; the second one is a psychological support group with a therapist, allowed only to Lupus patients. Sometimes the group meets only to chat and have a pizza.
18th February 1995
Meeting in Milano with people responsible for health problems at some Regions and at the Ministry. We discussed the problem of a suitable health service to the Lupus and Sclerodermia patients. In the same day we had a round table discussion with immunology experts who answered to our questions.
25th February 1995
Celebration of 7th Anniversary of the Group operating in Brescia. This Group has been our first local branch developed. They meet once a month at the Hospital of Brescia, every last Saturday, and they act as landmark also for people from Milano, Bergamo, Monza and so on.
14th - 15th March 1995
At the Rosetum Theatre in Milano, a troupe played a comedy of Michael Frayn "Noises Off". The profits were divided between the SLE and the Sclerodermia Italian Groups.
28th - 29th March 1995
We took part in The Second International Patients Conference on SLE in Jerusalem, Israel.
22th April 1995
General Meeting in Palermo.
13th May 1995
The SLE Annual National Day was held in Piacenza. Prof. Marmont from the S. Martino's Hospital in Genova was our guest; he spoke about the news in the Fourth International Conference on SLE in Jerusalem. Subsequently we had the round table with doctors willing to answer to our medical questions.
30th September 1995
General Meeting in Milano. Prof. Sessa held a talk about "Renal diseases in SLE"; Dr. Gambini about "Involvements of the nervous system in SLE" and Prof. Scorza spoke about
"The flaring possibility of the disease"; the round table with doctors aswering to our questions closed the meeting.
Local Activities organized in Genoa by the Genova and Liguria's Regional SLE Group:
28th October 1995
Dr. Mauro Costa held a talk about "Obstetric and Gynaecological problems in SLE"
18th November 1995
Prof. Alfredo Rebora about "Skin problems in SLE"
24th November 1995
In collaboration with The Genoa Medical Association and the University of Genoa, a refresher course was held on "New diagnostic procedures and treatments" to provide
General Practitioners with specific information about SLE
27th Januar 1996
Dr. Flavio Nobili talked about "Involvement of the central and peripheral nervous system in SLE"
16th March 1996
Dr. Stefano Saffioti talked about "SLE and Kidney involvement"
24th February 1996
Celebration of 8th Anniversary of the Group operating in Brescia.
11th May 1996
The SLE Annual National Day took place in Genova. In the Morning 5 conferences on some problems related to lupus: Prof. E. Damasio held talk about "Clinical aspects of SLE", Prof. F. Indiveri about "Traditional treatmnts and new therapeutic modalities"; Prof. Raffaella Scorza talked about "Genetic factors and heredity questions", Prof. Accardo about "Articular and muscoloskeletal involvement in SLE"; Prof. Marmont explained if "Bone-marrow transplantation may be a possible therapeutical approach? ". In the afternoon a round table with doctors answering to our questions closed the meeting.
June 1996
A new Regional Group was opened in Padova.
16th November 1996
General Meeting will take place at the University of Parma.
Usually, in General Meetings about 250-300 people attend to the works. And in local workshops about 50-70 patients are present. General Meetings, local workshops and round tables are generally very appreciated because not only they help the patients to improve their knowledge about the disease, but also support contacts between the doctors treating LE patients favouring a multidisciplinary approach.
We receive a subscription fee from our members, somtimes some donations by benefactors. For local activities we search for obtaining specific financing from Pharmaceutical Companies, Private or Public Bureaux.
To reach the general public, we go on talking in television and radios, and writing on the newspapers about Lupus, our initiatives and events. When we have the opportunity we try anyway to contribute to the spreading of information about SLE and our Group. In recent years we have noted that SLE has become a more widely discussed topic. "Star bene"
(Getting Well) is a national magazine dealing with health topics, very cheap and at very high circulation; recently it dedicated a dossier to Lupus and Autoimmune Diseases.
In 1996 we had a meeting with the new Ministry of Health. We introduced SLE and our Group, and we ask her to take into consideration some economic problems concerning the health service to the Lupus patients. In fact according to the actual Italian legislation, a Lupus patient must pay some essential drugs and fundamental clinical tests are not free of charge.
Maria Teresa Tuccio
E. L. E. F.
European Lupus Erythematosus Federation