EUROPEAN SYMPOSIUM ON RARE CARDIOVASCULAR DISEASES

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EUROPEAN SYMPOSIUM ON RARE CARDIOVASCULAR DISEASES Joint meeting between the Mondaldi-SUN and UCL EUROPEAN SYMPOSIUM ON RARE CARDIOVASCULAR DISEASES Joint Meeting between the Monaldi-SUN and UCL Scientific Programme endorsed by the Myocardial and Pericardial Diseases ESC Working Group Preliminary Programme Naples - Italy 4th- 6th March, 2015

Dear Friends and Colleagues, Diseases of the heart and blood vessels are major contributors to human morbidity and mortality and while most are the consequence of common disorders such as hypertension and coronary artery disease, a substantial proportion is caused by rare cardiovascular disorders that collectively constitute a disease burden greater than that of many cancers. Several reports have raised the profile of inherited cardiovascular conditions in European Health policy and the importance of rare cardiovascular disease is reflected in the political and research priorities of the European Commission. The aim of this meeting in Naples is to bring together clinicians and scientists from across Europe to discuss the current state of the art in diagnosis and treatment of rare cardiovascular disorders and to stimulate proposals for collaborative research and management guidelines. We are extremely excited by this project and believe it to be an important step in the improvement of care for patients with rare cardiovascular disease. On behalf of the Monaldi Hospital/Second University of Naples, University College London and The European Society of Cardiology, we welcome you to Naples and wish you a productive and enjoyable meeting. Perry Elliott & Giuseppe Limongelli

OPENING CEREMONY 4 th March 2015 15.00 Welcome Addresses 15.30 Introduction: aims and objectives of the meeting P. Elliott (London - UK), G. Limongelli (Naples - I) 15.45 The Industry perspective H. Furberg (Naarden - NL) 16.10 The European Society of Cardiology-WG21: future perspective A. Caforio (Padua - I) 16.35 Raising the profile of rare cardiovascular disease in Europe P. Elliott (London - UK) 17.00 Keynote Lecture: Molecular basis of RASopathies M. Tartaglia (Rome - I) 17.30 Closing Remarks 2

THE HEART IN INHERITED METABOLIC DISEASES 8.30 SESSION ONE - MUCOPOLYSACCHARIDOSES 10.00 Chairmen: E. Murphy (London - UK), M.G. Russo (Naples - I) 8.30 Overview of MPS R. Parini (Monza - I) 9.00 Management of cardiac disease in MPS J.P. Kaski (London - UK) 9.30 Roundtable discussion on multidisciplinary care and challenges of long-term management of cardiac disease in MPS Moderators: G. Andria (Naples - I), P. Elliott (London - UK) Discussants: D. Hughes (London - UK), J.P. Kaski (London - UK), G. Limongelli (Naples - I), R. Parini (Monza - I), P. Russo (Cerignola - I) 10.00-10.30 Coffee break 5 th March 2015 10.30 SESSION TWO - FABRY DISEASE 12.00 Chairmen: F. Cecchi (Florence - I), P. Elliott (London - UK) Discussants: P. Charron (Paris - F), A. Colao (Naples - I), A. Pisani (Naples - I) 10.30 The heart in AFD A. Linhart (Prague - CZ) 11.00 Treatment and adjuvant therapies D. Germain (Versailles - F) 11.30 Novel Biomarkers in AFD D. Hughes (London - UK) 3

12.00 SESSION THREE - DEBATE: NEXT GENERATION SEQUENCING 12.30 SHOULD BE ROUTINE IN THE ASSESSMENT OF GENETIC CARDIOVASCULAR DISEASE Chairmen: E. Arbustini (Pavia - I), L. Monserrat (La Coruna - E) Speakers: Contra: P. Charron (Paris - F) Pro: J. Mogensen (Odense - DK) 12.30-13.30 Lunch 5 th March 2015 13.30 SESSION FOUR - GLYCOGEN STORAGE DISEASES 15.00 Chairmen: P. Charron (Paris - F), G. Parenti (Naples - I) 13.30 Diagnosis and management of Pompe disease G. Limongelli (Naples - I) 14.00 Danon disease & disorders of autophagy M. Arad (Tel Hashomer - IL) 14.30 Polyglucosan body disease E. Murphy (London - UK) 15.00-15.30 Coffee break 4

15.30 SESSION FIVE - TREATMENT FRONTIERS IN RARE 17.10 CARDIOVASCULAR DISEASE Chairmen: A. Anastasakis (Athens - GR), P. Golino (Caserta - I) 15.30 HCM I. Olivotto (Florence - I) 15.50 Amyloidosis G. Merlini (Pavia - I) 16.10 Laminopathies J. Mogensen (Odense - DK) 16.30 Idiopathic pulmonary arterial hypertension M. D Alto (Naples - I) 16.50 Familial hypercholesterolaemia P. Calabrò (Naples - I) 17.10 Keynote Lecture 17.40 European perspectives on rare disease A. Kent (London - UK) 5 th March 2015 Closing remarks 5

8.30 SESSION SIX - NEUROMUSCULAR DISEASE & THE HEART 10.30 Chairmen: C. Rapezzi (Bologna - I), F. Salvatore (Naples - I) 8.30 Dystrophin related disorders E. Arbustini (Pavia - I) 9.00 Myotonic dystrophy D. Duboc (Paris - I) 9.30 Mitochondrial disease P. Elliott (London - UK) 10.00 ROUNDTABLE THE ROLE OF THE CARDIOLOGIST IN THE MANAGEMENT OF NEUROMUSCULAR DISEASES Chairmen: G. Frisso (Naples - I), A. Linhart (Prague - CZ) Discussants: A. Anastasakis (Athens - GR), E. Arbustini (Pavia - I), D. Duboc (Paris - F) 10.30-11.00 Coffee break 6 th March 2015 11.00 SESSION SEVEN - HOW TO DIAGNOSE RARE CARDIOVASCULAR 12.30 DISEASE Chairmen: A. Caforio (Padua - I), G. Pacileo (Naples - I) 11.00 EMB E. Arbustini (Pavia - I) 11.20 Role of laboratory testing A. Anastasakis (Athens - GR) 11.40 Imaging C. Rapezzi (Bologna - I) 12.00 Multiparametric diagnosis C. Basso (Padua - I) 12.20 Panel discussion 6

12.30-13.30 Lunch 13.30 WORKSHOPS: DIAGNOSIS OF RARE CV DISEASE 16.30 Group A (Red) Group B (Blue) Group C (Yellow) Group D (Green) W1 (Room 1) Imaging echo A. Anastasakis (Athens - GR) / G. Pacileo (Naples - I) W2 (Room 2) Imaging MRI J. Moon (London - UK) / C. Rapezzi (Bologna - I) W3 (Room 3) Pedigree/Genetics G. Frisso (Naples - I) / J.P. Kaski (London - UK) W4 (Room 4) Pathology E. Arbustini (Pavia - I) / P. Francalanci (Rome - I) 16.30 Closing remarks 6 th March 2015 7

With compliments of

PRESIDENT OF THE CONGRESS Raffaele Calabrò CONFERENCE ORGANIZERS Perry Elliott Giuseppe Limongelli Giuseppe Pacileo Maria Giovanna Russo VENUE Monaldi Hospital Via Leonardo Bianchi, 1 80131 Naples - Italy Tel. +39 081 7062815-7062683 ORGANIZING SECRETARIAT meeting solutions O.I.C. srl Viale G. Matteotti, 7 50121 Florence - Italy Tel. +39 055 5035200 Fax +39 055 5528421 v.fini@oic.it