Italy: Fondazione Paola Gonzato-Rete Sarcoma ETS
Fondazione Paola Gonzato-Rete Sarcoma ETS
Ornella Gonzato, President
Paolo Casali, Chairman
Trust Paola Gonzato-Rete Sarcoma Onlus is the new denomination of Associazione Paola per i tumori muscolo-scheletrici, which was founded in 2008 by Ornella Gonzato in Udine, in memory of her sister Paola. This legal transformation does not change at all the final goal which remains to be a non-profit organization operating for the benefit of the sarcoma community.
The transformation derives from the need to comply with the new Italian legislative framework on the not-for-profit sector together with the will to enhance the experience gained in over 10 years at the service of the sarcoma patient community.
In this changing process, Trust Paola has acquired the Passnetwork website which has become its official website with the new designation www.retesarcoma.it. Passnetwork was born in 2010 thanks to the financing of a research project of the Ministry of Health which was led by Prof. Paolo Casali (INT Milan) and Associazione Paola has always been from the beginning the main strategic and operational partner.
The aim of the Trust is to develop the activities already begun by Associazione Paola by extending them and by focusing on building a “network” among all those who operate in the sarcoma field.
More precisely, the goals are:
- to contribute to the improvement of care for patients with sarcoma by working in all critical areas of care, research, drug access and information;
- to collaborate on the establishment and implementation of sarcoma networks, both at national and European level, with the aim of improving access to care and ensuring patients’ rights;
- to develop and disseminate information, also through the set up of multimedia platforms on sarcoma diseases, centres of excellence, available treatments and on-going clinical trials;
- to refer patients to the excellence centres;
- to carry out and/or contribute to national and European awareness-raising campaigns;
- to promote and develop patient empowerment for a better decision making in their disease path;
- to encourage and support the training and education activities of non-specialist health care professionals in order to reduce as much as possible from the beginning diagnostic/therapeutic mistakes which could be harmful to patients;
- to support specialised training programmes for all health care professionals involved in the sarcoma multidisciplinary care team;
- to cooperate and develop partnerships with other public or private organizations which operate in the same area of interest or share common vision and goals;
- to support and directly participate in the development of both basic, translational and clinical research as well as social-economical research.
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