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First Patient/Doctor Meeting in Italy Concludes | International Pemphigus Pemphigoid Foundation

First Patient/Doctor Meeting in Italy Concludes

The first Patient/Doctor Meeting was held in Italy on May 18, 2009 in the IDI Dermatological Hospital, Rome.

The meeting was extremely interesting and the room was filled with patients coming from all over Italy. Topics included: discussions on what pemphigus is, oral pemphigus, how to control the disease, the side effects of prednisone, other treatments, and the bureaucratic and legal steps a person has to follow to obtain social security support. After a light lunch, there was a question and answer session.

Thanks go to the dedication of Dr. G. Cianchini and of two pemphigus patients, Sara and Giovanna, who succeeded through hard work, in getting together so many people.

Most of the participants already knew a lot about their disease but the doctors presentations were clear, simple and to the point. This was the very first time in which patients from the North, South and Central Italy could get to know each other, share their experiences, hear doctors speak about pemphigus and answer their questions.
No doubt it was a great success. No time was wasted. Sara and Giovanna had prepared a draft for a future Italian Pemphigus Foundation, which was read and approved by those present. In the next days we shall follow-up on what has to be done. Dr. Cianchini gracefully accepted to be a member of the Board.

Our great wish is also to be part of the IPPF and I believe my role will be to between the IPPF and the new Italian Pemphigus Association.

נשלח ב Issue 57 - Summer 2009
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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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