Italy: A.I.G. Associazione Italiana GIST

Organisation Profile

A.I.G. Associazione Italiana GIST is a non-profit organization, founded in 2006, providing information, support and assistance to patients affected by GIST and to their families.  It acts in cooperation with national and international patient organizations, medical community and pharmaceutical companie, with the support of Fondazione IRCCS Istituto Nazionale dei Tumori in Milan and in collaboration with the Italian Rare Cancer Network which gathers more than 100 oncology facilities.

Objectives

• To supply Information and knowledge about GIST to Italian patients, overcoming language barriers. News and information from worldwide scientific and clinical sources are made available to Italian patients.
• To offer support to patients and caregivers
• To represent GIST patient rights with local and national health authorities
•  To promote scientific research on GIST with clinicians, pharma companies, hospitals
•  To raise public awareness 

Brief description of the organisation

• A.I.G. Is an all-volunteer, non-profit organization started in 2006 with the co-operation and help of Dr. Paolo G. Casali, Head of Sarcoma Dept. in the NCC (Fondazione IRCCS Istituto Nazionale dei Tumori, Milano) and with Novartis?support.
• A.I.G. Is member of UNIAMO, Rare Disease Italian Federation, member of Global Gist Network and founding member of SPAEN.

A.I.G. is member of

• Global Gist Network www.globalgist.org
• UNIAMO Italian Federation of Rare Disease www.uniamo.org
• and founding member of SPAEN

Audience: GIST patients, caregivers and doctors. As of today, 450 Italian patients and caregivers have signed in our website.
Ways of communicating with constituency: Website, newsletters and listserv.
Key program: reaching out to patients, promoting GIST awareness and clinical research.
Latest activities in Italy: seven local patient meetings were organized in 2010 (Milan, Rome, Bologna, Genoa, Florence, Bari and Messina) and four teleconferences among GIST expert doctors and patients.  In 2011, other patient meetings will be organized (Milan, Turin, Padoa, Rome, Naples, Sardinia)