AISP ODV is a voluntary association in accordance with the law 266/1991, equalized to non-profit organizations, and institution of the Third Sector, founded by parents and patients. AISP aims at providing, without profit, support to people affected by Poland Syndrome and their families in order to help them finding answers to their problems, both from the diagnostic point of view and from that of healthcare and therapy.
The association intends to dive the support and comfort needed to solve the problems deriving from the syndrome. To achieve these results the Association works in the following fields:
- socio-educational for different age ranges, from kids to adults and parents (meetings, conferences for families, association holidays);
- conferences (seminars, conventions)
- information and awareness-raising on rare diseases and Poland Syndrome (shows, concerts and recreational/educational workshops);
- information, awareness-rising, health assistance in collaboration with different medical facilities accredited by AISP;
- hospitality, legal, social, educational and psychological support,
- promotion and/or coordination of self-help actions;
- fund, support and promotion of scientific actions aiming at improving and enhancing knowledge of this rare disease;
- Enhancement of scientific knowledge on a national and international level;
- development and support of a communication and information exchange system among people affected by PS and their relatives.
AISP Board of Directors, appointed by the Member Meeting in November 2018, is made up of:
- Eva Pesaro: Chairwoman (parent – Genoa)
- Federico Bardi: Vice-chairman (carrier – manager of the Biobank project – Pisa)
- Maria di Matteo (parent – relationship with the territory – Naples)
- Ilaria Baldelli (Doctor – Genoa)
- Lorenzo Mellini (carrier – Ravenna)
ASSOCIATIVE AREAS
Administrative and Junior Staff: Massimo Masi
Communication: Anna Venturini
Graphic design and print: Pier Giorgio Magrassi
Scientific advisor: Marco Crimi
Psychotherapist: Santa De Stefano
Lawyer: Francesca Carli
Social Reception and Counseling Service (SACS): Cristiana Gabriele, Elisabetta Cocconcelli, Maria Di Matteo
Social worker: Social.Net
SCIENTIFIC COMMITTEE
Chairman: Dr. Michele Torre – Paediatric surgeon (GENOA – OU Peadiatric Surgery Istituto Giannina Gaslini)
Chairwoman: Dr.ssa Ilaria Baldelli – Plastic surgeon (GENOA – Reconstructive Plastic Surgery – IRCCS AOU San Martino –IST – Genoa)
MEMBERS
- Dr.ssa Chiara Barone – Geneticist (CATANIA – Maternal Child Health Division Centro di Consulenza Genetica e di Teratologia della Riproduzione)
- Dr. M. Francesca Bedeschi – Geneticist (MILAN – U.O.S.D. di Medical Genetics – Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico)
- Dr. Sebastiano Bianca – Geneticist (CATANIA – Maternal Child Health Division Centro di Consulenza Genetica e di Teratologia della Riproduzione)
- Dr. Maria Grazia Calevo – Biostatician (GENOA – Epidemiology and Statistic Service Istituto Giannina Gaslini)
- Dr. Marco Castori (SAN GIOVANNI ROTONDO – FG – U.O.C. Medical Genetics)
- IRCCS Ospedale Casa Sollievo della Sofferenza –Health Center. Giovanni Paolo II)
- Dr Santa De Stefano – Psycholgist (MILANO – Rare Disease Office – IRCCS Ca’ Granda Foundation Ospedale Maggiore Policlinico)
- Dr Mario Lando (MODENA – Struttura Complessa di Chirurgia della Mano – Policlinico)
- Dr. Fulvio Lorenzetti – Plastic Surgeon (PIU.O. Plastic Surgery Ospedale Cisanello Azienda Ospedaliero Universitaria Pisana – Pisa – Plastic Surgeon
- Prof. Carlo Martinoli – Radiologist GENOVA – Radiology – IRCCS AOU San Martino – IST)
- Dr. Adalmaria Puliti – Geneticist (GENOVA – U.O. di Molecular Genetics and Cytogenets Istituto Giannina Gaslini)
- Prof. Pierluigi Santi, Plastic Surgeon (GENOVA – Reconstructive Plastic Surgery – IRCCS AOU San Martino –IST)
- Dr. Silvana Sartini – (MODENA – Responsabile di Struttura Semplice Dipartimentale Riabilitazione della Mano – Policlinico)
- Dr.ssa Lucia Spada – Psychologist (GENOA – Center for Matrimonial and Pre-matrimonial Education)
- Dr. Maura Valle – Radiologist (GENOA – U.O. Ragiology Istituto Giannina Gaslini)
