EAMDA basic program of activities

i) 46th Annual General Assembly of EAMDA, September-October 2017

ii) EAMDA 47th Annual General Assembly 2018 in any member organization’s country

iii) Establishment of sufficient basic funding for EAMDA activities through EU and other funds

iv) Complementary EAMDA cooperation with TREAT-NMD, EDF (European Disability Forum), ENMC (European neuromuscular center), ISRN (International Society for Restorative Neurology), EURORDIS (European Organization for Rare Diseases), EFGCP (The European Forum for Good Clinical Practice), EPF (European Patients’ Forum), EFNA (European Federation of Neurological Associations), IDA (International Disability Alliance) and perhaps other European institutions for rare diseases

v) Engaging the experts, who have the new conceptions how to treat people with Neuromuscular disorders. The basic conceptual task for EAMDA is to determine the particular elements in the field of health and disability care that enable EAMDA, in addition to being the representative voice of people with neuromuscular disorders, to develop appropriate activities with extremely modest human and financial resources. The basic premise is that EAMDA can contribute an added value to implementing the concept of restorative neurology which suggests that biological solutions improve the quality of life for people with neuromuscular disorders without eliminating the reasons for those disorders. The second conceptual issue is the progressive nature of disability that leads people with neuromuscular disorders to permanent physical dependence on other people, although these topics are avoided or willfully neglected in the medical circles. In both cases EAMDA has to rely on expert knowledge and best practice cases.

vi) More and more different pharmaceutical substances are used in clinical trials on the persons with neuromuscular disorders. Undoubtedly ethical principles are being considered. Regardless whether the promising purpose of a trial is the cure or the treatment, there is a serious concern because the medical researchers generally relay on external physical criteria (e.g. ability of 6 minutes’ walk) through evaluation process, while on the other hand they neglect improvements in the quality of life that person with neuromuscular disorders experiences on subjective level.

vii) Supporting and monitoring of the Convention on the rights of persons with disabilities implementation in the member countries

viii) Supporting implementation of TREAT-NMD directives for medical treatment and clinical trials on the national levels

ix) Supporting Youth Camp in Croatia and other EYO activities

x) Spreading of awareness that EAMDA is representative voice of European people with neuromuscular disorders

xi) Capacity building of organizations of people with neuromuscular disorders in the middle, east and south European countries

xii) Establishing at least the minimum basic information flow of EAMDA members using internet technology

xiii) Taking active part on three to six international conferences

xiv) Spreading news bulletins on EAMDA activities

xv) Keeping office of EAMDA in Ljubljana with support of infrastructure of Neuromuscular Association of Slovenia. Organizing regular Executive Committee meetings thought Skype and organizing one on-site Executive Committee meeting.