The Association has the following purposes: A. To raise awareness to society about STXBP1 gen mutation disease, with epileptic encephalopathy and/or global development delay, both motor and cognitive. B. To provide support, information and advice to affected families. C. To promote and give financial support to investigation projects aimed to search early diagnosis, investigation projects to improve quality of life and comfort of affected people; and investigation projects which objectives are search of an effective treatment to reduce the disease symptoms and/or the cure. D. To promote and support professional training related to STXBP1 syndrome.
Each of GlobalGiving’s nonprofit partners is required to send quarterly donor reports detailing the impact of their work.