BEGIN:VCALENDAR PRODID:-//github.com/rianjs/ical.net//NONSGML ical.net 4.0//EN VERSION:2.0 BEGIN:VEVENT DESCRIPTION:Patient organisations ABMM\, AIM\, AMES\, and Liga MG\, with t he support of argenx\, would like to invite you to their online pan-Europ ean conference\n\n \;Myasthenia Gravis in Europe: an EU perspective T uesday\, November 29\, 2022\, from 17:30 to 19:00 CET.\n\nPresentation My asthenia gravis (MG) is a serious\, rare\, and chronic neuromuscular auto immune disease that can cause debilitating and potentially life-threateni ng muscle weakness. It affects 56\,000 to 123\,000 people in Europe. On N ovember 29\, patients\, HCPs and policymakers will discuss the burden of disease in different EU countries and how harmonised and integrated Europ ean policies that improve the lives of MG patients and their caregivers c an be implemented.\n\nTo address these challenges\, our patient organisat ions\, supported by argenx\, have joined forces to organise a series of p atient and caregiver workshops to collect new empirical data on the burde n of MG\, and to develop new\, concrete recommendations on how their need s should be addressed. In the context of current discussions on the need for a coordinated EU rare disease strategy\, these recommendations look i n particular at how MG could be better incorporated in national rare dise ase strategies and care pathways\, and how European exchanges and collabo ration on best-practices could be encouraged to address the substantial d ifferences that remain between EU member states.\n\nThey also put the foc us on the need to better recognise the specific needs of informal caregiv ers of rare disease patients in light of the Commission’s recent EU Care Strategy\, which has been proposed to member states. To present these fin dings and recommendations\, we warmly invite you to join our online high- level conference on 29 November from 17:00 to 19:30 for a pan-European di scussion with patient representatives\, senior clinicians\, regulators an d policymakers – see our programme and registration link below.\n\nProgra mme\n\nOpening speech Introduction and presentation of the event by a hig h-level speaker\n\nKeynote speech\n\nPresentation on the burden of diseas e for MG patients\, based on exclusive real-world data by Francesco Saccà \, Professor in Neurology at the University “Federico II” of Naples\n\nRo undtable: Myasthenia gravis’ impact on patient and caregiver lives: simil arities and differences across EU Member States\n\nDiscussion between MG patient association representatives and medical experts from different EU Member States such as:\n\n• Belgium: Lutgarde Allard\, Board Member of L iga MG\, and Jean-Marie Huet\, President of ABMM\n\n• Italy: Renato Mante gazza\, President of AIM and professor of the Department of Neuroimmunoly and Neuromuscular Diseasesa\n\n• Spain: Raquel Pardo\, President of AMES \n\n• Germany: a representative from DMG (to be confirmed)\n\n• France: B éatrice Nectoux\, on behalf of the Myasthenia Patient Group of AFMTélétho n and AMIS\n\nRoundtable: Shaping harmonised and integrated European poli cies that improve the lives of MG patients and their caregivers Discussio n between national and European policymakers\, MG patient association rep resentatives and medical experts\n\nConclusion\n\nConclusion of the discu ssion and next steps by Jean-Philippe Plançon\, Chairman of EPODIN and Vi ce-president of Alliances Maladies Rares \;\n\n\n DTEND;VALUE=DATE:20221129 DTSTAMP:20260313T210238Z DTSTART;VALUE=DATE:20221129 LOCATION:\, SEQUENCE:0 SUMMARY:Patient organisations ABMM\, AIM\, AMES\, and Liga MG\, with the s upport of argenx\, would like to invite you to their online pan-European conference\n&... UID:db6b2930-4139-4828-9f69-eda0d175765e END:VEVENT END:VCALENDAR