ASSOCIAZIONE ITALIANA GLICOGENOSI

THIS IS OUR ASSOCIATION LOGO:TWO CHILDREN HOLDIG A BALLON IN THEIR HANDS

REPRESENTING THEIR ILLNESS.A BALLON THAT WILL FLY HIGH ONCE ALL THE

GLYCOGENOSIS HAVE A BETTER FUTURE.

WHY HAS IT STARTED?

IN THE FAR 1996 A GROUP OF FAMILIES JOINED TOGETHER

STARTED THIS ASSOCIATION IN ORDER TO DEAL WITH

GLYCOGENOSIS AT A NATIONAL LEVEL;

THE REASON WE STARTED THE ASSOCIATION WAS

THE SENSE OF ISOLATION AND ANGUSH LINKED TO THE RARITY OF THIS ILLNESS. MOREOVER, TO OUR IMPOSSIBILITY TO ASSURE THE

FUTURE OF OUR SONS AND DAUGHTERS.

MAIN GOALS

1. TO TAKE A CENSUS OF PATIENTS SUFFERING FROM THIS ILLNESS;

2. TO PROVIDE BOTH PRACTICAL AND PSYCHOLOGICAL HELP TO FAMILIES, CHILDREN, TEENAGERS AND EVERYONE INVOLVED WITH THIS ILLNESS;

3. TO MAKE THE PUBLIC OPINION AND INSTITUTIONS AWARE OF OUR EXISTENCE;

4. TO PROMOTE SCIENTIFIC RESEARCH.

WHICH WAYS

1. BY HELPING FAMILIES FACING AND SOLVING PROBLEMS REGARDING THIS ILLNESS: we made a video showing how to put the stomach pump in. Prof. Gatti wrote a guide for patients and families. Moreover a personal document called “carta d'emergenza” illustrates how a patient can manage critical situations;

2. BY PROVIDING FAMILIES A SERVICE OF GLOBAL CONSULTANCY: amongst our affiliates we can count a lawyer, a psychologist and a pediatrician and therefore, we are able to provide help in many ways;

3. BY BUYING MEDICAL INSTRUMENTS: such as glycemia gauge.

CONTINUES…

4. By Organizing meetings regarding glycogenosis all around Italy in

the presence of families and scientific researchers;

5. By getting in touch with Italian and foreign research institutes in

order to promote basic and clinical research: Ospedale Gaslini di

Genova, Ospedale S.Matteo di Pavia, L’Istituto di Patologia

Generale dell’Università di Siena, Policlinico Università di Milano

and Telethon;

6. By organizing campaigns to inform and awaken public opinion by means of

mass media: in the occasion of the release of the film with Harrison Ford we

organized at Anteo cinema in Milano a press conference named

"Extraordinary Measures: a discussion about rare myopathies". In the past we

realized a spot broadcast by the Italian network Mediaset. Moreover we

are on megazines, daily newspaper and network.

• By delivering scholarships in order to promote the visibility of our

association;

• By financing research and genic therapy projects;

• By trying to improve our presence on the web with a forum that allows the contact with young people.

CONTINUES...

WHAT WILL WE DO NEXT?

We would like to talk with you all about research projects because we

strongly believe that everyon’s contribution could help to broaden our

knowledge.

CONTINUES…

Nowadays our Association counts about 216 patients and about 300

benefactors/supporters.

TYPE PATIENTS

1A 37

1B 29

2 54

3 42

5 13

Other 41

A BEAUTIFUL TALE

Zeljko is a boy from Herzegovina suffering from glycogenosis 1A.

Thanks to us and the aid of the International Red Cross, he came to Italy for an

hospitalization. He arrived here in poor health:didn’t have the strength to talk and to

stand up. Thanks to our economical aid he was sent to San Gerardo Hospital in

Monza doctors had took care of him.

His health conditions got better day by day and Zeljko went back to his country

with everything he needed to handle his disease for what concerns dietotherapy and

pharmacology.

A year later he came back to Italy for a check up and when we met him we could not

believe what we saw: he came towards us smiling.

This scene moved us deeply.

A BEAUTIFUL TALE

Zeljko before the treatment

Zeljko after the treatment

OUR TEAM

GOVERNORS

THE PRESIDENT:

DOTT.FABRIZIO SEIDITA

AND VICE-PRESIDENT:

SIG.ra ANGELA TRITTO MAZZOTTI

THANKS FOR THE ATTENTIONwishing to continue on our way together

AIG-Associazione Italiana GlicogenosiAssociazione di Volontariato ONLUS di DirittoVia Roma, 2/G20090 Assago (MI)

Tel.: 02 4570 3334 Fax: 02 700 405 465 E-mail: aig.assitagli@iol.it Sito WEB: www.aig-aig.it