Progetto Mitofusina







PURPOSES AND OBJECTIVES

1.
To provide financial support to scientific research devoted to the study and cure of pathologies caused by Mitofusin 2 gene mutations The funding for this research will be financed by both public and private organisations in Italy, and shall be focused on the clinical and laboratory aspects of such mutations. Specifically, the association aims to fund meaningful research projects or scholarships for the professional development of researchers. To do so, associates volunteer to organise and promote fundraising activities and initiatives to develop genetic research of CHARCOT-MARIE-TOOTH DISEASE;

2.
To specifically provide financial support to the “DEVELOPMENT OF A STEM CELLS-BASED APPROACH FOR THE TREATMENT OF CMT DISEASE ASSOCIATED WITH MITOFUSIN 2 GENE MUTATIONS (CMT2A2)” project;

3.
To raise and promote public awareness on the problems experienced by patients suffering from Mitofusin 2 gene mutations – related pathologies, as well as to raise funds to promote and support scientific and pharmaceutical research;

4.
To create a communication network for families of patients and to support initiatives aimed at promoting the physical and psychological well-being of patients and their families, as well as to help with the patients' rehabilitation into society;

5.
To actively contribute to the enhancement of the information heritage about fundamental support for patients and their families, by providing information about ongoing research studies, treatments, support centres and diagnosis centres;

6.
To promote and support the creation of groups, associations and scientific medical projects aimed at the study and finding of a cure for CMT2A2: to organise, support and promote events, meetings, and conferences aimed at raising the awareness and the promotion of the exchange of information about the pathology, as well as to advocate for public and legislative interventions;

7.
To promote contacts and collaborations with the National Health System, Universities, Hospital centres and other relevant local and regional services, both public and private, both national and international in order to carry out said activities. We also aim to contract agreements and collaborations with other associations, companies or institution with similar aims and objectives;

8.
To maintain contacts and collaborations with other associations, in Italy and abroad, dealing with rare pathologies in general and, specifically, with Charcot-Marie-Tooth disease and other neuromuscular and mitochondrial pathologies;

9.
To promote the association's activities with publications and coverage in the media, as well as via internet and the web, according to applicable law;

10.
To raise funds to support the above mentioned activities.


ITALIAN DOCUMENTATION


ATTO COSTITUTIVO STATUTO ISCRIZIONE ALBO ONLUS