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AIPAF The Italian experience Renato Astarita

Onlus. AIPAF The Italian experience Renato Astarita. Onlus. "The Italian Association of Anderson-Fabry Patients was set up in Autumn 2002 thanks to the commitment of a family who was faced with the problem of how to deal and live with a rare disease such as Fabry disease".

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AIPAF The Italian experience Renato Astarita

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  1. Onlus AIPAF The Italian experienceRenato Astarita

  2. Onlus "The Italian Association of Anderson-Fabry Patients was set up in Autumn 2002 thanks to the commitment of a family who was faced with the problem of how to deal and live with a rare disease such as Fabry disease" Now we have 50 people involved in our association

  3. Onlus MAIN GOALS OF A.I.P.A.F.: support patients and relatives in dealing with Fabry disease by providing general information on the disease, diagnosis, therapeutic strategies; organize meetings between doctors and patients to discuss clinical, pathological, diagnostic, legal aspects and any other issue regarding Fabry disease; identify structures and institutions which can help find solutions to improve the quality of life of patients and their families in terms of healthcare and social life.

  4. Onlus • What have we done • until today?

  5. Onlus WHAT WE HAVE DONE TO SUPPORT PATIENTS • We have helped more than 10 families to: • Get in touch with several Italian specialists on Fabry Disease • Economically support patients’ trips to these specialists • Organization of a Scientific Committee • More than 10 Italian physicians specialized in Fabry Disease • who can answer the association questions

  6. Onlus WHAT WE HAVE DONE TO SPREAD FABRY DISEASE KNOWLEDGE • Informative brochure • Diffusion of the association • Diffusion of Fabry Disease knowledge • Infusion Diary • Importance of compliance • The site www.aipaf.org • Stay in touch • Stay updated • Be friendly • Grant support to Dr.ssa Minuti

  7. Onlus • What are we doing for the future?

  8. Onlus • One in forty thousand • A book that collects the human experience of people affected by Fabry Disease • Italian Patients Meeting • December 18th • Media information

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