ESID LISBOA 2018 ESID LISBOA 2018 PORTUGAL NEWBORNS 140 000 120 000 10.427.301 INHABITANTS 100 000 80 000 60 000 40 000 20 000 0 ESID LISBOA 2018 PIDs IN PORTUGAL N=997 SCID H H CID 148; 15% 140; 14% COMBINED SYNDROMIC ANTIBODIES 61; 6% H IMMUNEDYSREGULATION 32; 3% PHAGOCYTE INNATE AUTO-INFLAMMATORY HH 534; 54% COMPLEMENT H REGISTRY • SINCE 1998 • • NATIONAL REGISTRY- REPORID ESID REGISTRY ESID LISBOA 2018 PIDs IN PORTUGAL MEDICAL STAFF H - FELLOWSHIPS IN WELL-RECOGNIZED PID CENTRES H - NEWCASTLE - PARIS H - LONDON - BARCELONA - SÃO PAULO HH H - PARTICIPATION IN INTERNATIONAL MULTICENTRIC PROJECTS - EU CALL ON PUBLIC HEALTH (E. GAMBINERI) - European Network for Immune Deficiencies (S. NEJENTSEV) ESID LISBOA 2018 PIDs IN PORTUGAL Hemophagocytic lymphohistiocytosis in two patients with underlying I FN-γ receptor-deficiency Bianca Tesi1,2,*MD, Elena Sieni3,*MD, Conceição Neves4, Francesca Romano5,Valentina Cetica3PhD, Ana Isabel Cordeiro4MD, Samuel Chiang6MSc, Heinrich Schlums6MSc, Luisa Galli7MD, Stefano Avenali8MD, Annalisa Tondo3MD, Clementina Canessa5MD, Jan-Inge Henter1MD,PhD, Magnus Nordenskjöld2MD,PhD, Amy P. Hsu9, Steven M. Holland9MD, Joao F. Neves4,*MD, Chiara Azzari5,*MD,PhD, Yenan T. Bryceson6,*PhD ESID LISBOA 2018 PIDs IN PORTUGAL • IMUNOGLOBULIN REPLACEMENT THERAPY H • IVIG- 79 PATIENTS H • SCIG- 73 PATIENTS • 36% children (N=56) H • HEMATOPOIETIC STEM CELL TRANSPLANTATION HH H • First HSCT in Portugal: 1994 (LAD1) • 39 patients underwent HSCT for PID since 1994 • 10/39 deaths (26%) • 1 haploidentical HSCT ESID LISBOA 2018 PRESIDENT: JOSÉ GONÇALO MARQUES (PT) Andrew Gennery Helen Chapel Graham Davies Alain Fischer Despina Moshous Capucine Picard Taco Kuijpers Eleonora Gambineri Klaus Warnatz Bodo Grimbacher Yenan Bryceson Tayfun Güngör Luigi Notarangelo Steve Holland Jean-Laurent Casanova Magda Carneiro Sampaio (UK) (UK) (UK) (FR) (FR) (FR) (NL) (IT) (GE) (GE) (SW) (SZ) (US) (US) (US) (BR) Susana Lopes da Silva Isabel Esteves Ana Espada de Sousa João Farela Neves Ana Cordeiro Emília Faria Laura Marques Margarida Guedes Júlia Vasconcelos Esmeralda Neves António Coutinho João Castro e Melo Manuel Vilanova (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) (PT) ESID LISBOA 2018 LISBON CONGRESS CENTRE 10’ DRIVE FROM AIRPORT 5’ FROM THE CENTRE 2’ FROM BELEM, ONE OF THE MAJOR ATTRACTIONS ESID LISBON 2018 LISBON CONGRESS CENTRE Year Event Name Venue Participants 2013 2012 2012 RI - Annual Convention of Rotary International ESICM - European Congress on Intensive Care Medicine CIRSE - Annual Congress of the Cardiovascular and Interventional Radiological Society of Europe EASD - Annual Meeting of the European Association for the Study of Diabetes EADV - 20th International Congress of the European Academy of Dermatology and Venereology FIL CCL CCL 25.000 4.000 6.173 FIL CCL 18.000 9.000 CCL 3.000 CCL CCL CCL CCL 2.800 1.103 1.000-1.500 3.500 CCL 5.360 CCL 3.000-5.000 CCL CCL CCL 3.917 1.168 1.800 2011 2011 2011 ISBT - XXIst Regional Congress of the International Society of Blood Transfusion 2010 2010 2010 2009 FTTH Conference 2010 IRF - 16th World Meeting of the International Road Federation ESRS - 20th Congress of the European Sleep Research Society 2009 CIRSE - Annual Congress of the Cardiovascular and Interventional Radiological Society of Europe 2008 2008 2008 2008 EFIC - 6th Congress of the European Federation of IASP Chapters "Pain in Europe EACTS - Annual Conference of the European Association for Cardio-Thoracic Surgery ESICM - European Congress on Intensive Care Medicine EUPHA - European Public Health Conference EOS - Congress of the European Orthodontic Society ESID LISBOA 2018 ESID LISBOA 2018 ESID LISBON 2018 ESID LISBOA 2018 SINTRA CASCAIS ESID LISBOA 2018 EXPECTATIONS Increase of Public, Political and Health Care Workers arousal for PID Reinforcement for the implementation of: - SCID Newborn screening - Establishment of a SINGLE HSCT Centre for PID - Investment on both clinical and basic investigation WELCOME TO PORTUGAL! WELCOME TO PORTUGAL!
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