The decision of founding the Association “DEBRA MOLDOVA” was taken by a group of 5 people. Each family having cite one member suffering from epidermolysis bullosa. Association “DEBRA MOLDOVA” was registered by the Ministry of Justice of the Republic of Moldova, on 20 September 2011.
We, the people who face the daily suffering from epidermolysis bullosa alone without the help of people outside our circle of family a number of problems, needs and pain. The decision of founding the Association “DEBRA MOLDOVA” to Foust because we made the epidermolysis bullosa patients and those who care for us we can create a community of common interests. To discuss everyday problems we face in order to exchange experience and to teach us how each one another to fight with the ordeal that we live in. We want much as we pay due attention to the state to become involved in our problem, not remain indifferent and implement laws about this disease and patients suffering from it. We too are part of society and we also have the right to a decent life. We are humans and we gave life and plight so unexpected and so it is very difficult without having and discriminated against and neglected by society.
We hope that we will be given more attention from the state, as well as the European Union and our life in the near future will change for the better.
3.1. The purpose of the Association “DEBRA MODLOVA” consists of:
· Rights and interests of people with epidermolysis bullosa;
• Identification and implementation of techniques and methods of health care sick with epidermolysis bullosa, treatment and their social protection;
· Helping, supporting and integrating them into society;
· Develop and promote projects that aim to support and social integration of people with epidermolysis bullosa.
3.2. To accomplish its goals, the Association “DEBRA MOLDOVA” will perform the following activities:
· Development of methods, concepts, ideas regarding knowledge and studying the phenomenon of promoting and protecting human rights and fundamental freedoms;
· Organizing and participating in seminars, conferences, meetings, lessons, etc., in order to achieve the statutory goals of attracting qualified specialists in priority areas of activity of the Association;
· Developing relationships with other similar organizations in the country and abroad;
· Attracting new members by identifying all people suffering from epidermolysis bullosa across the country;
· Implement ideas and projects that will inform patients of epidermolysis bullosa about new technologies, methods and findings on the treatment of patients with epidermolysis bullosa, both from the country and abroad;
· Assistance to socially vulnerable people;
· Provide, in accordance with the requirements of legislation, advisory assistance, analysis, evaluation, monitoring;
· Development, implementation / execution, evaluation and monitoring of various projects at local / national in order to develop social-economic and human potential of the Republic of Moldova and in order to achieve the objectives of the Association;
· Organize periodical meetings by members of the Association, especially among young people and children;
3.3. To achieve its goals the Association has the right:
· Represent the interests of Association members in talks with public authorities and other organizations;
· Safeguarding rights and interests of its members;
· Create their own mass media;
· To conduct editorial activity;
· Freely disseminate information about its activities;
· To obtain from public authorities information necessary to the statutory activity;
· Conclude contracts on behalf of or to procure goods and perform in accordance with the statutory purposes;
· To participate in national and international competitions in order to achieve social orders and subsidies from the state and to obtain grants and scholarships from other countries, from national foundations, foreign and international;
· Conclude with individuals and legal entities bilateral and multilateral cooperation agreements, in order to achieve aims and statutory duties;
· Enterprises and other organizations to create the right legal entity;
· To purchase property complexes, movable and immovable property necessary for the activity and ensure proper functioning of the Association;
· Enjoy the other rights granted by law.
3.4. In accordance with art. 188 Civil Code and Art. 26 of Law no. 837-XIII on Public Associations, the Association has the right to conduct economic activity resulting directly from the goals set forth in statute and exclusively for authorized purposes.
Supporting those who want to join us is welcome.