כניסה ישירה לפורום
	Association Profile     The Israeli Association for Gaucher was founded in 1991 by a few patients and their family members with the recognition and support of Dr. Ari Zimran from the Sha'arey Tzedek Medical Center in Jerusalem. Dorit Levi, Yael's (a Gaucher patient) mother has led the association from its early days. The main goal set by the association was to make accessible the enzyme treatment that is on the market today, but was out of reach for so many patients. The intensive work done by the association and its public/media relations, led to Gaucher being recognized as one of five major illnesses that are covered by the State of Israel's national medical statute in 1995. This action allowed every Gaucher patient to receive medical treatment if they required it. In clause 21 of the above medical law it states "treatment for Gaucher" (as agreed by a professional medical committee) as part of the medical service that is provided to the citizens of the state of Israel. Duties: Chairman – Dorit Levi Tayler Adv. Association Secretary – Tzvika Artan Head of friend relations and medical company relations – Gil Faran. Head of finance and relations abroad – Yossi Cohen, Varda Trauger. Head of home treatment – Dolli. Head of the association's magazine (Gaucherton) – Raul Asif. Head of functions and events – Yael Adini,Nita Asif. Head of Internet Website – Gil Barda. Head of relationship with medical centers –Dr Niv Gold. Head of Gaucher forum- Dr mici Philips, Gill Barda, Dr Niv Gold.     Association Goals: To provide assistance for Gaucher patients (both individuals and groups). To represent Gaucher patients. To provide valid information for Gaucher patients and their family members. To distribute information about the illness to institutions, health professionals, etc. To provide a support center, in order to unite patients and their family members. To support the study and research of Gaucher disease. To communicate with other associations worldwide in order to provide the most accurate and relevant information for Gaucher patients in Israel. Association Activities: Yearly Gaucher patients' conference. Distribution of the Gaucher magazine (Gaucherton). Support and consultation via the phone. Publicity, targeting caregivers and pharmacists – lectures and information. Member and lead promoter of E.G.A – the European unity for Gaucher patients. A project for home treatments in association with Genzyme. Activities for association members aimed at improving patient's quality of life. Distribution of current information via the association's website. << לפרופיל העמותה בשפה העברית