The association

We are parents, brothers, uncles and friends of fantastic children, who love to play, jump, run like everyone else.
To our princes and princesses, however, genetics has pulled a bad “joke”: their young lives have to deal every day with a disease as unknown as serious, Mucopolisaccaridosis type 3 or “Sanfilippo syndrome”.

At the moment there is no cure for our young, only gimmicks to live daily with the symptoms of this disease. And yet, one very important thing that we can and must count on is research.

We want to make as many people as possible aware of this disease. Given its rarity, there are many doctors, pediatricians, teachers and therapists who do not know it and therefore do not know how to recognize it in children. Understanding it is the first step in dealing with it.

Our association was born with these purposes

To stimulate, to demand, to help and to raise funds for the search for a cure for this syndrome, because we do not want to give up on this diagnosis

Bringing families together so that they can exchange advice, experiences and give each other support in the management of their special children

Be of help to the families who will be diagnosed in the future Sanfilippo syndrome,because the moment you discover it is like a stab to which it is difficult to react, which makes you feel lonely and helpless

Intents of our association

To stimulate, to demand, to help and to raise funds for the search for a cure for this syndrome, because we do not want to give up on this diagnosis

Bringing families together so that they can exchange advice, experiences and give each other support in the management of their special children

Be of help to the families who will be diagnosed in the future Sanfilippo syndrome,because the moment you discover it is like a stab to which it is difficult to react, which makes you feel lonely and helpless

Contacts

Via Giuseppe Brini 47B 40128 Bologna

Support the research

At the moment for our little ones there is no cure, there are only small gimmicks to try daily to live with the symptoms but there is a very important thing on which we must have hope:
search.

Projects

Our association supports scientific research and is close to families who face Sanfilippo syndrome every day.
Find out what projects we’re carrying out and if you have any ideas we’re listening.

Association organization chart

  • Katia Moletta, President
  • Marta Frattolillo, Vice President
  • Andrea Domenico Zucco, Treasurer and Secretary
  • Mirka Paini, Councillor
  • Ilenia Turelli, Councillor
  • Dario Lentini, Councillor
  • Cristina Ostuni, Counsellor
  • Ursina Schmid, Founding Member
  • Claudia Prcic, Founding Member
  • Mario Rosario Raciti, Founding Member
  • Italian
  • German
  • English