N. Kerlero de Rosbo , J. Bismuth, S. Berrih-Aknin, and the EuroMyasthenia Consortium

1. The EuroMyasthenia Project: What has it brought to the MG community? N. Kerlero de Rosbo, J. Bismuth, S. Berrih-Aknin, and the EuroMyasthenia Consortium

2. The Team The Objectives The Results The EuroMyasthenia Project Started officially on January 1, 2006, will end on December 31, 2009 Motivated by the need to coordinate efforts to improve knowledge on MG and optimize patient management to level out differences between European countries Project co-financed from the EU Public Health Programme 2003-2008

3. Communication and Dissemination 2009 25 countries 2008 22 countries 2007 19 countries 2006 13 countries Expansion of the network Sweden • Scientists and clinicians from all over Europe: from 24 in 2006 to 36 in 2009 Ireland Scotland Norway Netherlands England Denmark • Number of patients’ associations: from 7 in 2006 to 17 in 2009 Northern Ireland Slovak Republic Germany USA Czech Republic Switzerland • Support of EuroMyasthenia Federation of European MG patients’ Associations now established as EuMGA • Incentive to creation of new MGAs (Greece, Czech Republic) Poland Italy France Bulgaria Portugal Romania Turkey Spain Croatia Greece Israel 10 Associated and 43 Collaborating Partners Cyprus 10 Associated and 21 Collaborating Partners 10 Associated and 40 Collaborating Partners 10 Associated and 33 Collaborating Partners

4. Communication and Dissemination Visits to www.euromyasthenia.orgthroughout the world 27 Oct. 2008- 26 Nov. 2009 • Website: www.euromyasthenia.org • Disseminates activities of the EuroMyasthenia Network • Provides MG-related information to patients, scientists, and clinicians • Is a link between patients and clinicians through the coordinator • Provides access to expert partner’s knowledge for help with patient management to isolated clinicians with little expertise on MG Newsletter: Quarterly through www.euromyasthenia.org

5. Communication and Dissemination Informative booklets in several European languages: From www.euromyasthenia.org; also printed for distribution in neurological centers throughout Europe. Informative leaflet:Distributed throughout Europe via the EuroMyasthenia Network partners

6. Evaluation Questionnaires for patients and neurologists: designed and distributed throughout Europe to gather information on disease status of MG patients, their needs, and expectancies from the EuroMyasthenia project. More information, more practical advice, more regular updates

7. Database Database with anonymized data accessible remotely to validated partners • Items included have been ratified by clinical and scientific experts of the network • Partners entering patients’ data according to ethical regulations in their respective countries • Data entered as mandatory items for the “basic” database, or as optional data to be included in “targeted” databases” (e.g. expanded database dedicated to psycho-socioeconomical epidemiology)

8. Psycho-socioeconomical determinants for MG • A questionnaire has been validated (C. Tallaksen’s group) to study a group of health determinants that EuroMyasthenia Partners believe might be important environmental modifying factors in MG disease and, to this date, have not been studied thoroughly. • Socio-economic factors (education, occupation, income) • Environment (exposure of harmful agents, infection, pollution etc) • Health behavior (smoking, alcohol, diet, drugs, physical activity) • Personal and biological factors (overweight, hormones)

9. Database Database with anonymized data accessible remotely to validated partners • Items included have been ratified by clinical and scientific experts of the network • Partners entering patients’ data according to ethical regulations in their respective countries • Data entered as mandatory items for the “basic” database, or as optional data to be included in “targeted” databases” (e.g. expanded database dedicated to psycho-socioeconomical epidemiology) Will serve towards epidemiological studies at the European level Will enable the sharing of precious samples towards biochemical, immunological, and genetic studies at the European level

10. Standardization Laboratory: Anonimyzed serum samples from 10 different patients with generalized MG Reference lab: Oxford Partner (A. Vincent’s group) PL1 PL2 PL3 PL4 PL5 PL6 PL7 PL8 PL9 PL10 AChR MuSK Abs 100% consensus between labs and with Reference Lab Standardization of anti-AChR and MuSK antibody testing in other countries Consensus on “borderline” samples? Clinical: Guidelines on diagnosis and treatment/management of patients Final versions can be downloaded from EuroMyasthenia website

11. Other important outcomes of EuroMyasthenia • Improved communication between scientists, patients, and health professionals, through its partners, but also through its website • Emphasis: scientists, clinicians, and patients associations must work together • Research must involve patients through patients’ associations • Instrumental in the establishment of EuMGA, the federation of European MG associations, which it strongly supports

12. Establishment of EuMGA • Milan, March 16, 2009: Meeting of the Working Group • Towards the Constitution of a European Federation of MG Patients’ Associations Present Board of Directors: Ms. Josipa Gazibara (President, Croatia), Mr. Peter Finney (Treasurer, UK), and Board Members Dr. Nadia Radulescu (Romania), Ms. Cristina Vatteroni (Italy), Mr. Johannes Gravgaard (Denmark), and Dr. Fulvio Baggi (Italy) • March 23, 2009: Company Limited by Guarantee under U.K. law with a registered office in England under the name “European Myasthenia Gravis Association” (Acronym EuMGA, web site www.eumga.eu). • Nov. 30, 2009: First General Annual Meeting

13. EuMGA now:

14. Other important outcomes of EuroMyasthenia • Improved communication between scientists, patients, and health professionals, through its partners, but also through its website • Emphasis: scientists, clinicians, and patients associations must work together • Research must involve patients through patients’ associations • Instrumental in the establishment of EuMGA, the federation of European MG associations, which it strongly supports • Incentive for creation of MGAs • Czech Republic MGA • Hellenic MGA • Go-between for the MG Community at the European level • Resolving of Mestinon crisis 1 in Romania • Sharing Mestinon resources crisis 2 in Romania • Patients  Network interactions (calls for help, for advice from all over Europe; appreciations, for newsletter in particular; suggestions/comments…)

15. The Future….?