Report from Portugal

1. Main objectives of the Association for 1996, steps taken and results already obtained.

1.1. Diffusion of Lupus disease knowledge to patients, families, doctors, and general public.

1.1.1. Organization and realization of meetings at two towns, one at the center and the

other at the south of the country, for patients and doctors.

1.1.2. We were invited to speak about the disease for families of a school near Lisbon,

and there were quite a lot of parents.

1.1.3. Appearances at TV shows (4).

1.1.4. Interviews and articles to magazines and newspapers (10) until now and 37 in

1995.

1.1.5. Interviews to two radio stations (one international).

1.2. Diffusion of Lupus Association knowledge to the new Government (there is a new

party as Government in Portugal).

1.2.1. The Direction of the Association had to pay visits to the new members of the

Government and to let them know our problems and aims: There had been visits

to 3 Ministries, 2 Secretaries of State and the Secretary of Reabilitation.

1.2.2. The wife of the President of Republic was invited to our Model Show and

accepted, being very kind.

1.2.3. As results of these visits we have already achieved:

1.2.3.1. The Secretary of Social Welfare gave permission and is already working "a Green Line" to speak to the Association offices without pay from all parts of the

country. They covered all the expenses and pay the monthly costs.

1.2.3.2. The Secretary of Rehabilitation doubled the amount of subsidy for this year.

1.2.3.3. The Ministry of Health inculded Lupus as a chronic disease at a list of diseases

whose carriers don't have to pay anything at Health Centers and Hospitals.

1.3. Another main objective of the Association is to get a law for tax. Free for all persons with Lupus since the diagnosis of disease.

1.3.1. We made a report about it and all the Direction was received by the Commission for Health to the new Parliament, and they were very receptive to the idea. The

law was not yet discussed at the Parliament, but we hope it will be this new year

of their work.

2. Events that took place

2.1. For fund raising.

2.1.1. There was a fashion show with paid entrances and it called the attention and

presence of many people.

2.1.2. We had a stand to sell things produced to the Association, and diffusion of

the disease at:

- The Golf Tournament of Aroeira

- The Open Tennis at Estoril

- The International car races of Estoril

2.1.3. The Association opened at our premises a workshop with a dress maker (who

has already an auxiliary), both patients who work also to everyone who wants. It

is a source of income.

2.1.4. There is already a lot of work done and planned for our ”Christmas Sale".

2.2. For Patients

We managed to have the 2nd National Meeting of Patients with Lupus, at Lisbon in a big space of the town county.

It went very well and with a lot of supporters we were able to pay travel expenses and stay at a Hotel in Lisbon to the patients who needed it, and offer lunch to all.

There were present about 650 patients and there was time for the patients to meet between them and their families, to know the direction and volunteers of the Association. We had doctors talking in private to patients who wanted it, 2 hairdressers

and 1 aesthetician, music and varieties.

3. Work done with and for patients at the Association headquarters.

3.1. We were given about 200 video cassettes of several themes and have now

”a Video Club” for patients.

3.2. This Winter a clinical psychologist will be 2 days per week to help patients

(free of charge) who want her help.

3.3. A hair dresser and an aestheticist will be there once a week.

3.4. The review was delayed due to external factors, but we hope to have it at the end of September.

3.5. Pursuing our idea of having courses at the Association with the idea for the

patients to enjoy their free time and also to them to try to have a source of income, the following courses will take place:

3.5.1. Cooking;

3.5.2. ”Arraiolos” (A kind of embroidery with wool, very

expensive at shops);

3.5.3. Computers;

3.5.4. Flowers;

3.5.5. English.

3.6. For the well being of patients there will be too:

3.6.1. Yoga and muscle relaxation;

3.6.2. Ball dances.

4. The Association became this year a member of the ”European Public Health Alliance”.

5. At March we had general assembly for elections. The direction (with exception of two members who had to be substituted) was re-elected for three years.

6. Besides having the pleasure of coming to Italy to the 8th Annual Convention of the ELEF, our President will be at the Patients Meeting at Barbados as a member of the

Executive Committee and will give two lectures.

7. The number of our members increased to a thousand patients.

8. The Association is now linked to the INTERNET.

Our E-Mail Adress is: lupus@oscar.pt and our home page is:

http://www.oscar.pt/lupus.

Rosa Maria Goncalves