Report of the European Myasthenia Gravis Association

Second Annual Meeting and General Assembly

February 26, 2011 - Zagreb, Croatia

The Second Annual meeting and General Assembly of the European Myasthenia Gravis Association (EuMGA) took place on February 26, 2011 in Zagreb, the capital of Croatia.

This venue was chosen to honour the memory of Dr. Josipa Gazibara, the inspirer and first Chairperson of EuMGA, who was also the President of the Croatian MG Society. We were honored to have at the meeting Josipa’s husband, Dr. Zlatan Gazibara, and the President of the Croatian MG Association, Professor Zlato Krsul: both personally appreciated our decision to have the EuMGA meeting in Zagreb, to remember our friend Josipa.

Twelve National MG organizations attended the meeting: Croatian Union of MG Societies, Association des Myasthéniques (AMIS-France), MGA of Finland, German MGA (DMG), Hellenic MGA (H-MGA), AIM - Associazione Italiana Miastenia, Associazione Italiana MIA onlus, Romanian MGA (ANMGR), MG Association of the UK  (MGAUK), Danish MGA, MGA of Hungary (MEOSZ), and Dutch Neuromuscular Disease Association, VSN MG Working Group.

The meeting was programmed to give representatives of national MG organizations the opportunity to present activities, expertise, and good practices of their organization, and to emphasize successes or specific problems encountered in each particular country.

Presentations were followed by discussions on common projects, such as the European MG Week and Rare Diseases Day. Most interestingly, the presentations showed that each organization has its own approach and strategy to pursue our common mission: the improvement of MG patients lives. Some associations are more orientated towards patients services, such as information, education, or availability of MG-specific medication (Finland, Romania, Greece, Hungary), while others have very good programs of rehabilitation and complex care, or have good expertise in fundraising activity to collect funds for research. For example: the Croatian and Danish MGAs have developed rehabilitation programs for MG patients, MGAUK funds its own training program for nurses specialized in MG, AMIS has created an online community for MG, Italian and German MGA raise funds to support research and awareness activities. There were exchanges and discussions, which were appreciated and deemed very fruitful by all.

The Second EuMGA General Assembly, a formal business meeting concerning the management of the Charity, was held at the end of the morning session. It included reports from the Chairperson of the Board and from the Treasurer, with approval of the 2010 Annual Balance, election of the Board of Directors, and reports from the Directors on their respective activities. After the Chairman’s and Treasurer’s reports, The EuMGA members have approved the Board of Directors for the coming year, and two new MG Associations, the Dutch and Belgian MG groups, have now become Associated Members of EuMGA.

EuMGA aims to work for the equality of chances among MG patients in Europe; our goal is the availability of a standard MG treatment, free of charge in all countries. Special discussions concerned the Mestinon crises in Romania and common efforts to find solutions to resolve this recurring problem. Issues arose regarding the availability of the drug Firdapse for LEMS and CMS patients in Europe and we discussed the possibility of a common project towards the authorization of the drug 3,4 DAP for CMS and making the product available again to these patients.

A booklet containing materials related to the meeting, as well as a list of all the European MG organizations and Helpline contacts was issued and offered to all the participants.

Fulvio Baggi

Chairperson, Board of Directors

Nadia Radulescu, Peter Finney, Cristina Vatteroni

Organizing Committee