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Update Summer 2000
ITALY: People with primary immunodeficiency and medicine join
forces
At the end of 1998 my husband Sandro left the leadership of
AIP after having been President since its birth in 1991. The new
president, Anna, from Bari, was forced to stand down after a few
months due to family and health problems. So, by the end of 1999
we had a another new Board, and apart from the former treasurer,
Gloria, and myself, all the trustees are new.
The professional expertise of the newcomers has given a new direction
to our Organisation. At the helm we have a young entrepreneur. We
are also very lucky to have a journalist that is expert in marketing,
to take care of all communications aspects. A great help comes from
a graduate in engineering, who is following the gammaglobulin safety
and supply issues.
Every year AIP organises a national conference for patients and
doctors (GP and Paediatricians). This year we wanted something different,
that would illustrate the development of our organisation. We put
together all our strengths, skills, creativity, good things and
even our mistakes to create our congress, named "Living with
primary immunodeficiencies today – Get-together between family
and medicine". This was held on May 6 in Brescia, where AIP
is located.
The change was evident in the organisation of the programme. First
we had a general introduction on the primary immunodeficiencies,
history, reality and perspective, followed by a presentation from
different specialists on CGD, XLA, CVID, SCID Hyper IgM, WAS, DiGeorge
Syndrome. But, and this is the novelty, before each medical presentation
there was the testimonial of a patient or a parent.
This "double presentation" brought together the emotion
of the real life of the patient, his difficulties, fears and hopes,
and the technical explanation and updates in the field given by
the immunologist. The emotional involvement was mutual.
I think it was a great success. The questions asked by the assembly
to the doctors were so many that we ran out of time.
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