The A-T disease (Ataxia-Teleangiectasia) is a rare hereditary degenerative disease that affects a variety of body systems. The children are born seemingly normal, but towards the end of the first decade of their lives, they are confined to a wheelchair and completely dependent on others, suffering from a poor immune system and a
tendency to malignancies. The disease is incurable and progresses is uncontrollable
The association for Fighting A-T disease was established by parents of children with A-T to provide
comprehensive support to the sick children and their families in order to improve their quality of life and extend their life expectancy. At that time, A-T was an "orphan disease", not recognized in the health system, which sometimes led to incorrect diagnosis that and even harmful treatments for the patient.. Today, due to the activity of the association, A-T is no longer an orphan disease. The association received recognition from government institutions, established a national multidisciplinary clinic for the treatment of A-T in collaboration with Safra Children's Hospital in Tel Hashomer, which was recognized in 2006 by the Ministry of Health
Thanks to the activity of the association, awareness of the disease and its prevention is increasing, through publications in the media, doctors and awareness events
Starting in 2021, the association leads and coordinates the activities of the Coalition of Rare Diseases in Israel, which works to promote broad goals of all patients with rare diseases, such as legislation, the establishment of a national registry for rare diseases, and more. The coalition managed to establish a lobby for rare diseases in the Knesset and promote the rare diseases law that was passed in the last Knesset on first reading.
Areas of activity of the organization
Support for patients and their families
Establishing and promoting the activity of the clinic for the treatment of A-T patients at the Safra Children's
Hospital in Tel Hashomer, which is a multinational center of specialization in the field of A-T treatment
Increasing awareness of A-T among the centers of medical knowledge and among the general public and populations at risk in particular in order to eradicate the disease
Promoting research to find a treatment and cure for the disease
Activity within the Coalition of Rare Diseases in Israel to promote the rights of all patients with rare diseases in Israel
We are All Together for one important goal