The Association for the fight against Gerstmann Straussler Scheinker’s syndrome was born at the end of 2019, from the will of the sons and relatives of the sick, who experienced first-hand the aggressiveness and violence of this rare disease.
The founding members, as set out in the statute, have decided to become a point of reference for the sick and their families, to support scientific research and to collaborate with every institution or public and private institution, to highlight the results achieved by the scientific research.
The Association also addresses sector operators such as general practitioners and neurologists: the rarity of the disease often makes it unknown. Strengthened by our past experiences of suffering and with an experience gained in the management of the sick and the positive person at the DNA test, we are ready to help you with our loved ones and other sick people. You will never be alone with us; we will always be ready to listen and support you.
The Association has different purposes:
1) Follow scientific research and give visibility to all members and non-members.
2) The Association is fighting to extend the patient's prospect of life; this is possible right now, although we aim to look for other substances that can reduce symptoms and bring the prospect of life to about 15 years in the future.
3) If we are contacted in order to obtain better therapeutic treatments than those in use, simply download the attached file and send it to Presidenza@aigss-it.org; your current state of health will be assessed and based on the response you will give us, you will receive personalized therapy from our neurologists, in order to avoid side effects. All this does not exclude specialist visits for those who wish (see the Useful Links section).