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NCO “ALL-UKRAINIAN ASSOCIATION FOR ASSISTANCE TO PATIENTS WITH CYSTIC FIBROSIS”

We are a non-profit organization that has been providing assistance to cystic fibrosis patients since 2010. The main goal of the association is to protect the rights and legitimate interests of people with cystic fibrosis and their family members, to help solve the problems of treatment and prevention of the disease, social rehabilitation and adaptation of patients.

Uniting all interested parties, our organization contributes to the acquisition and dissemination of scientific and practical knowledge in the field of prevention, diagnosis and treatment of cystic fibrosis.

THE MAIN PURPOSEs OF THE ASSOCIATION are:

1. Protection of the rights and legitimate interests of people suffering from cystic fibrosis and their family members, assistance in solving the problems of treatment and prevention of the disease, social rehabilitation and adaptation of patients;
2. Promotion of the acquisition and dissemination of scientific and practical knowledge in the field of prevention, diagnosis and treatment of cystic fibrosis;
3. Distribution and improvement of services that provide assistance to patients with cystic fibrosis and their family members;
4. Formation of a professional community and a single information space for specialists who provide assistance to patients with cystic fibrosis.

THE MAIN AREAS OF THE ASSOCIATION’S ACTIVITIES ARE:

increasing the level of awareness of the public, state authorities and local governments about the scale of the cystic fibrosis problem, methods of its treatment and prevention, rights of people suffering from cystic fibrosis;
protection and protection of the rights and legitimate interests of people suffering from cystic fibrosis in various spheres of society, at all levels of government;
assistance in the development and implementation of state and municipal programs for the support and treatment of persons suffering from cystic fibrosis;
support for the creation of a genetic laboratory for work on cystic fibrosis problems;
support and creation of enterprises producing medicines, nutritional supplements and medical equipment necessary for the treatment of patients with cystic
fibrosis; lobbying for legislative confirmation of the life status of a disabled person after the patient turns 18;
supporting and carrying out activities aimed at protecting the rights and legitimate interests of people suffering from cystic fibrosis, popularizing knowledge about cystic fibrosis, methods of its treatment and prevention;
participation in the organization and financing of joint programs and projects with state authorities, local self-government bodies, enterprises, organizations and institutions;
receiving assistance in the form of funds or property received free of charge, non-refundable financial assistance, donations, grants, income from holding special events (charity shares) from residents and non-residents of Ukraine to achieve the Association’s statutory goals;
provision of financial, material, technical, informational and humanitarian assistance to persons suffering from cystic fibrosis;
holding conferences and seminars devoted to issues of protection, protection and implementation of the rights and legitimate interests of persons suffering from cystic fibrosis, methods of treatment and prevention of cystic fibrosis;
organization of meetings, rallies, other organizational and mass events in accordance with the requirements of the current legislation of Ukraine;
providing access to the most modern and effective methods of diagnosis, treatment and rehabilitation of children and adults suffering from cystic fibrosis;
provision of social, material and other support to families who have children suffering from cystic fibrosis and who need expensive diagnosis, treatment and rehabilitation;
provision of social, material and other assistance to children’s institutions and organizations;
informational and medical educational activities aimed at identifying sick children who need diagnosis, treatment and rehabilitation;
submission of proposals to state authorities on issues aimed at achieving the Association’s statutory goals;
representation of the interests of sick children and adults in state authorities and local self-government bodies in the manner and under the conditions determined by the current legislation of Ukraine;
organization and holding of conferences, festivals, sales exhibitions, lotteries, charity concerts and other charity events, the proceeds of which are directed to the resolution of the Association’s statutory goals;
implementation of lecture activities;
actively promoting the development and implementation of a modern system of medical care, new forms and methods of rehabilitation, as well as the creation and implementation in the production of highly effective drugs, reagents and other tools and equipment necessary for patients.