EAMDA – European Alliance of Muscular Disorders Associations (http://www.eamda.eu/)
Patient Organisation Profile
- Founded/Established in and Short synopsis of aims and objectives
EAMDA is the European Alliance of Neuromuscular Disorders Associations and works to support and improve the quality of everyday life of people with neuromuscular disorders (NMDs). It was established in 1974 in London, UK. Later EAMDA has been moved to Valetta, Malta and in 2008 to Ljubljana, Slovenia. EAMDA brings together muscular disorders associations across Europe with the aim to advocate the rights and interests of everyone living with a neuromuscular disorder, to raise awareness, to promote research activities and knowledge sharing, to prevent the consequences of disability and to support efforts towards new treatments for neuromuscular disorders.
- (Up to) 2 major achievements/ongoing work
Organizing regular annual general assemblies (AGAs) with extensive medical and social part of the program is currently the main activity of EAMDA. AGAs are, as a rule, held every year in a different European state. EAMDA’s member associations have a chance to present their medical-research and social topics there. They also draw the attention of decision-makers and national political actors on the challenges that their respective member organization is faced with when trying to enable persons with NMD to enter the inclusive and creative social environment. In some states the medical fields dealing with muscular and neuromuscular disorders are at a very high level while in other states they are still developing. The same applies to the social aspect: the more developed European countries have already recognized the intellectual and other potential of persons with NMD and despite very severe forms of disability enabled them equal participation and active inclusion in the society through a broad range of support services (such as personal assistance, restorative and vocational rehabilitation etc.). Persons with NMD are thus enabled to find regular employment, create a family, pay taxes and contribute to the social progress and development. Organizing youth camps for people with NMD is another achievement of EAMDA. We are engaging young people from different parts of Europe to attend interesting summer youth camp, full of rehabilitation, educational and social activities.
- Outline of plans for 2018 – focus on major awareness day or activity (if applicable)
EAMDA is going to organize 47th annual general assembly (AGA) in Prague, Czech Republic between 20th to 23rd September, 2018 (Clarion Congress Hotel Prague). The main focus this year will be on new therapies that are currently available for people with NMD (Spinal muscular atrophy, Duchenne muscular dystrophy, Pompe disease, Limb-girdle – type 2D,…). The main focus will be on knowledge exchange between medical doctors and other scientists working in the field of neuromuscular disorders, as well as providing better awareness of disease and possible treatment solution for people with NMD, their parents, caregivers etc. We engage also local authorities to participate with the process of providing people with neuromuscular disorders better conditions for social inclusion, treatment possibilities, rehabilitation and other important activities for people with NMD.
- Statement of importance of working with physicians(/EAN) and comment on what a patient organisation – such as EAMDA – can add to the scientific community
The news about the results of basic research into human neurology, especially regarding individual neuromuscular disorders and access to new treatments available worldwide is one of the most relevant issues for EAMDA. In that sense, EAMDA support individual researchers, as well as follows news in the field of new drugs, like: SPINRAZA (Nusinersen) for treating spinal muscular atrophy patients, ATALUREN (Translarna™) for persons with Duchenne muscular dystrophy, Myozime/Lumizyme for treating Pompe disease.
EAMDA co-operates with different European NMD associations and their representatives that have connections with local decision makers and pharmaceutical companies. EAMDA is a member of different international associations such as: European Patients’ Forum (EPF), European Federation of Neurological Associations (EFNA), EURORDIS-Rare Diseases Europe and European Disability Form (EDF). EAMDA also co-operates with other respective associations active in the field of neuromuscular disorders. Its main goal is to establish an accessible and inclusive environment for people with neuromuscular disorders as well as to ensure the necessary medical and social services, with the final aim to achieve their social inclusion.
- You can find out more about who we are and who we represent here:
New EAMDA webpage is linked to be published pretty soon and also data on board members will be available there.
- Should you wish to know more, please get in touch with:
Contact person
Ivanka Jovanovic, EAMDA Vice president
Or visit our website at:
www.eamda.eu
