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.
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
The birth of the sprout as the logo for the Sanfilippo Fighters.
It was the year 2017, a potentially watershed year for three families with a child suffering from a rare metabolic genetic disorder, Mucopolysaccharidosis 3.
You can help us and support research in many ways, any help, even a small one, can make a differenc
SANFILIPPO FIGHTERS APS
Via Giuseppe Brini 47/B
40128 Bologna (BO)
Codice fiscale: 91426890371
