European MG contacts: a brief history
The first European MG contacts were established as early as 1978. At the annual general meeting (AGM) of the European Alliance of Neuromuscular Dystrophy Associations (EAMDA) in Stockholm (SE) MG was put on the list of future EAMDA projects and the Dutch NMD association (VSN) was asked to take the responsibility for this project. VSN first reported on the progress of the project on the AGM in London (1980).
The first official MG symposium was organized in Gothenburg (SE) in 1981 (6 countries present) and also at the AGM of EAMDA in Freiburg (DE) in 1982 there was a separate MG workshop (4 countries present). In 1983 in Baarn (NL) at the annual meeting of EAMDA there were 9 countries present at the separate MG session and the final report of the project was presented. At that meeting also a working group was formed, consisting of Ingunn Björnsen (NO), Monika Paulin (SE) and Birte Brejner (DK). The task of the working group was “to coordinate the international cooperation in the myasthenia field”. The aims were formulated as:
- To inform
- To exchange experiences concerning medical, social and organizing problems
- To bring about mutual inspiration.
The working group called out to all EAMDA members to identify MG contact persons who might be interested in this kind of collaboration.
The next meeting was organized in Billund (DK) in 1986. 10 countries were present and all countries presented their organization. There also was a presentation by professor Ann Kari Lefvert (SE).
We discussed the following questions: Which problem is the biggest having MG in your country? And: How can you organization help you solving that problem?
The answers that came up will sound very familiar all these years later:
- Doctors and others working in the health service often seem to have very little knowledge about MG. That gives problems concerning early diagnosis, treatment and follow-up of treatment.
- Centralisation of treatment is very important because the doctors need to have much experience with MG patients in order to give the most qualified treatment.
- Organisations must make MG better known to people suffering from it and to doctors.
- Greater awareness of MG can avoid unnecessary anxiety among the patients.
- MG is a hidden handicap and it is fluctuating. That is difficult for other persons to understand a might lead to isolation. Leaflets and cards with short information can be of great help. Getting together with other people with MG is in many aspects of great help in solving problems in daily life too.
The next European MG working group consisted of Birte Brejner (DK), Ilona Keil (DE), Colette Fettu (FR), Monika Paulin (SE), Kathrin Buffon (CH) and Johan Voerman (NL). EAMDA agreed that the working group continued to function under its auspices and use the EAMDA logo.
As aims for the working group we decided upon making an inventory of the brochures and other information material that was already present in the different countries. And we set out to find contacts in countries where there was no patient organisation yet. We also set out to make a checklist / handbook for organisational MG work.
We met a few times as a working group and all our contacts provided the written materials that were available in their countries. We had to rely on telephone and normal mail, but we got a lot of information nonetheless. Through our contacts with specialists in our own countries we were able to contact specialists in some countries were there was no patient organisation yet and get into contact with some of their patients. We provided our experiences in founding and running a patient organisation, but I don’t know if any new association was founded on the basis of our information.
The next meeting was in Frankfurt (DE) in 1989. Representatives from 11 countries were present.
The working group reported on its activities and many fruitful exchanges of information occurred. Dr. B. Schalke gave a lecture.
Several working group members had to resign for a number of reasons and the next working group consisted of Ilona Keil (DE), Marguérite Friconneau (FR) and Johan Voerman (NL).
The working group set out to collect information materials from the different countries and to make the MG Handbook in which all relevant information should be comprised.
At the next meeting in The Hague (NL) in 1992 (11 countries) the handbook was presented. We also had follow-up discussions on the subjects of Medical aspects, Psychological and social aspects and Public relations. And we had a lecture from the Dutch MG specialists dr. Kuks and professor Oosterhuis.
The new working group was installed: Margareta Andersson (SE), Marguérite Friconneau (FR), Josipa Gazibara (HR), Ilona Keil (DE), Johan Voerman (NL) and Hilde Westgaard (NO).
Marguérite offered to host the next meeting in Paris.
At that next meeting (in 1995) 15 countries were present. The working group reported on its activities and there were lectures by prof. H. Benony and by drs. J. Sanchez and D. Velche. Also all countries presented their associations and the way in which they worked.
Marguérite, Ilona and Johan continued in the working group and they presented a work plan for the next years, including the organising of a next meeting. But it appeared increasingly difficult to obtain funding for a conference like this and also the need for the meetings seemed to have diminished, because in the following years no one asked us when the next meeting would be. So we kept in contact as a working group, but the contacts diminished and we stopped our work after a while.
Written by Johan Voerman
EuMGA was the name from 2009 – now
EuMGA was founded in 2009 by delegates from MG – Croatia, MG – Denmark, AIM – Italy, MIA – Italy, MG – Romania, MGA – UK.
2009 was the year EuMGA had a board that was not only patient driven, but there were also both neurologist and patients, the by-annual meeting was now shifting from one country to another. It was a one-day meeting were there was a formalised agenda, key point from the member countries was presented, different scientist was invited to present a project and there was the election of new board members.
In 2016 the UK left and because the registration of the association was in the UK, it also had to be changed. The next years the energy of the EuMGA board was used to do so, and in 2023 it succeeded and the EuMGA is now registered in Belgium.
After Brexit, EuMGA is registered as an Association Internationale Sans But Lucratif (AISBL), according to Belgian Law.