What is EAMDA?
EAMDA is abbreviation of the European Alliance of Neuromuscular Disorders Association. It was established in 1974 and since it has been working as an European umbrella organization for associations, related to people with neuromuscular disorders. The main purpose of EAMDA is to work with partner organizations across Europe to increase the awareness about neuromuscular disorders and to improve the quality of life of people with these disorders. Our members are European associations of people with neuromuscular disorders. EAMDA’s vision is that people with neuromuscular disorders should stand together and cooperate in order to receive better access to health care and to improve the standard of living in their countries.
What are the main goals of EAMDA?
EAMDA’s mission is to be united influential voice of people with neuromuscular disorders on European level. Our main goals as European organization is to increase the awareness of public about neuromuscular disorders and different networks of NMD associations, to represent, protect and enforce the rights and interests of people with neuromuscular disorders and to improve the quality of life of people with neuromuscular diseases in terms of equal treatment, personal assistance, accessibility, independent living and full participation in the society. Another set of goals for EAMDA is to provide information about new medical treatment for neuromuscular disorders, to work for better access to quality health care, to involve more national associations and people with NMD in the development of united network for cooperation and interaction between European organizations working in the field of neuromuscular disorders. That’s why EAMDA supports development of neuromuscular disorders associations and other organizations across Europe that represents different groups of neuromuscular disorders. EAMDA helps to empower people with neuromuscular diseases and tries to provide opportunities for cooperation with them on European level. The main purpose of the organization is to teach people with neuromuscular disorders to self-help and to train family members and social assistants to live quality life in spite of the disability.
What are the main tasks of EAMDA?
In order to achieve EAMDA goals, we organize meetings and workshops with the aim to disseminate information about new treatments and practices in the field of neuromuscular disorders. Also EAMDA supports different researches in the area of early diagnosis, adequate medical treatment and rehabilitation services. The organization develops opportunities for distribution and exchange of specialized knowledge in this field and invests efforts for higher education about the specifics of neuromuscular disorders. That’s why EAMDA encourages development of different associations working in the field of neuromuscular disorders. The main task of the organization is to build supporting network for people with neuromuscular diseases that is going to improve their standard of living and will advocate their rights, which includes also cooperation with local authorities and related national and international organizations.
What is the structure of EAMDA?
As European umbrella organization, EAMDA consists of European member associations that are national Muscular dystrophy associations engaged in the fields of neuromuscular disorders. EAMDA headquarter is located in Ljubljana, Republic of Slovenia. The structure of EAMDA is composed by Executive Committee (EC), which is in charge of the running, operating and management of the organization. EC consists of the President, the Secretary General, two Vice Presidents, and three members. They are all elected by the Annual General Assembly (AGA). All EC members have 4-year mandate. After the end of their mandate they can be dismissed or elected again. EC members should meet at least once a year during the AGA. They discuss the development of the organization in order to ensure EAMDA is fulfilling the tasks and other obligations according to the statute.
What are the obligations of the Executive Committee?
Executive Committee (EC) members have to implement EAMDA’s decisions, policies and recommendations. They represent the organization on international and national level and implement activities in order to put its main program into practice. EC members have to actively participate in these activities and they have to contribute to their popularization. Also they are in charge of financial matters of the organization. EC members cooperate and do the work together in order to implement the principles and goals of EAMDA more efficiently. They are responsible to coordinate activities for organizing Annual General Assembly and presenting reports on EAMDA’s activities, financial matters and other tasks. The main purpose of the EC is to contribute to the development of the organization, to enhance the collaboration between NMD organizations, to attract new members to EAMDA community, to spread the main principles and policies of the organization and to represent EAMDA as European central organization for people with neuromuscular disorders throughout the world.
What is Annual General Assembly?
The Annual General Assembly (AGA) is the highest governance body of EAMDA. Chaired by EAMDA President, it allows all EAMDA members to meet on an annual basis and to review association’s achievements. This Assembly should be organized every year before the end of December. The AGA has all necessary powers required to implement the policy of EAMDA and to review the duties of the organization. These powers also include approval of the annual action program, revision and approval of the financial plan and financial operations of the organization for the previous year. The AGA often is organized as major event for people with neuromuscular disorders across Europe. The assembly combines not only meeting for all EAMDA members, but also annual conference for the latest achievements in medicine and social life for people with NMD. According to the current basic program of activities the organization of the AGA is one of EAMDA’s most important activities and it is useful source of information for the progress of the organization. AGA is organized each year in different European country which allow us to get familiar with local and national achievements in medical and social aspect, and to closely cooperate with national authorities and government in order to ensure people with neuromuscular disorders better conditions in theirs local environment.
Who can become EAMDA member?
Every national neuromuscular disorders association, which operates on the territory, where it is registered, may become member of EAMDA. Secondly, every European association, which has interests in the field of neuromuscular disorders can become member of the organization. EAMDA is open for membership to all European associations, which have interests to participate in the creation and development of international and European network for people with neuromuscular disorders. All members of the organization have equal rights and they can contribute to EAMDA’s achievements and development on European level.
What is the procedure for our organization to become member of EAMDA?
Every association, which would like to gain membership in EAMDA and meet admission requirements from previous question, should submit an application form, in which express its desire to become a member and accepts the policy, goals and tasks of EAMDA. In addition to that every association should provide specific information for its structure in order to achieve membership in EAMDA. This data includes the name of the association, head office, identification number, legal representative and a copy of the registration decision. New members are reviewed and accepted by the Executive Committee. Each association, which is member of EAMDA, is expected send its representatives to attend the Annual General Assembly, which allows every member association to actively participate into the organization.
What are the obligations and rights of EAMDA members?
EAMDA member representatives have the rights to vote and be voted to the bodies of the organization, to accept EAMDA decisions, to suggest different initiatives and actions and to be informed about the work of EAMDA. The obligations of EAMDA members are to spread the news about the progress of the organization, to carry out the tasks, which are entrusted to them by EAMDA, to pay membership fee, to attend or to send representatives at the Annual General Assembly, to participate in courses, seminars and other activities, organized by the organization and to share common ideas with EAMDA about the development of the neuromuscular disorders organizations across Europe.
How EAMDA could help me, if I am person with neuromuscular disorder?
EAMDA is European organization established for people with neuromuscular disorders. The association provides information about the newest treatments other supportive programs for people with neuromuscular disorders and tries to present positive achievements in the medical treatment of people with neuromuscular disorders. EAMDA builds network for cooperation between different European NMD organizations for neuromuscular disorders and can provide access to big community of experts and people with neuromuscular disorders. The main purpose of EAMDA is to support people with neuromuscular disorders in order to improve their quality of life. All EAMDA efforts show that people with neuromuscular disorders shouldn’t be isolated and life with neuromuscular disease may be challenging, but not impossible. Persons with NMD are thus enabled to find regular employment, create a family, pay taxes and contribute to the social progress and development. Therefore the persons with NMD are regarded as an opportunity and not as a burden as some still unfoundedly assume. That’s why EAMDA tries to unite the community of people with neuromuscular disorders and to create preconditions to build strong and effective network of support.