Educational material on rare diseases

Interactive e-learning content

	Pseudo-asthma: when cough, wheezing and dyspnea are not asthma (but airway malacia) P. Merkus, P. Pohunek Open

	Idiopathic Pulmonary Fibrosis: understanding the natural course of the disease R. Du Bois, B. Crestani Open

	New treatment strategies in Interstitial Lung disease A. Wells K. Antoniou Open

	8-year-old boy with chronic cough, recurrent wheezing and rhinorrhea A. Jung (Davos, Switzerland), C. Bütikofer (Zürich, Switzerland) Open

	Alpha1-antitrypsin deficiency and COPD B. Balbi (Veruno, Italy), I. Ferrarotti (Pavia, Italy) Open

Guidelines

Factors influencing age at diagnosis of primary ciliary dyskinesia in European children C.E. Kuehni, T. Frischer, M-P.F. Strippoli, et al. Eur Respir J 2010; 36: 1248-1258
European Respiratory Society Guidelines for the diagnosis and management of lymphangioleiomyomatosis (LAM) S.R. Johnson, J.F. Cordier, R. Lazor, et al. Eur Respir J 2010; 35: 14-26
Primary ciliary dyskinesia: a consensus statement on diagnostic and treatment approaches in children A. Barbato, T. Frischer, C.E. Kuehni, et al. Eur Respir J 2009; 34: 1264-1276
ATS / ERS: International Multidisciplinary Consensus Classification of the Idiopathic Interstitial Pneumonias ATS Board of Directors, June 2001 and by the ERS Executive Committee, June 2001 Am J Respir Crit Care Med. 2002; 165: 277-304
Task force on chronic interstitial lung disease in immunocompetent children A. Clement and committee members Eur Respir J 2004; 24: 686-697

CME tests

Primary ciliary dyskinesia Djakow Jana, O’Callaghan Christopher Breathe 2014; 10:122-133

Webcasts

Plasma exchange are not associated with better outcome in MDA5 Rapidly-Progressive Interstitial Lung disease. P. Bay (Creteil, France), M. Pineton De Chambrun (Paris, France), R. Vicent (Bobigny, France), M. Mahevas (Créteil, France), N. De Prost (Créteil, France), A. Roux (Suresnes, France), B. Zuber (Suresnes, France), D. Israël-Biet (Paris, France), A. Tazi (Paris, France), H. Baptiste (Paris, France), M. Luc (Paris, France), A. Mekinian (Paris, France), C. Deligny (Fort De France, France), R. Borie (Paris, France), J. Meurice (Poitiers, France), A. Meyer (Strasbourg, France), P. Priou (Poitiers, France), L. Savale (Le Kremlin Bicetre, France), L. De Saint Martin (Brest, France), P. Brillet (Bobigny, France), P. Khafagy (Bobigny, France), O. Benveniste (Paris, France), H. Nunes (Bobigny, France), Y. Allenbach (Paris, France), Y. Uzunhan (Bobigny, France)
Nonresponders and rare mutation classes: ex vivo models to test CFTR modulator efficacy I. Oglesby (Dublin 9, Ireland)
Local Administration of Targeted Liposomes Loaded with Everolimus for Interstitial Lung Disease in Systemic Sclerosis L. Pandolfi (Pavia, Italy), V. Frangipane (Pavia, Italy), A. Urzainqui (Madrid, Spain), A. Marengo (Paris, France), K. Bohne-Japiassu (Paris, France), V. Codullo (Pavia, Italy), L. Cavagna (Pavia, Italy), V. Vertui (Pavia, Italy), S. Bozzini (Pavia, Italy), M. Morosini (Pavia, Italy), S. Castañeda (Madrid, Spain), E. Fattal (Paris, France), F. Meloni (Pavia, Italy)
A First-in-Class PRS Inhibitor, DWN12088, as a Novel Therapeutic Agent for Systemic Sclerosis and Associated Interstitial Lung Disease C. Lee (Yongin, Republic of Korea), D. Bae (Yongin, Republic of Korea), M. Cho (Yongin, Republic of Korea), S. Shin (Yongin, Republic of Korea), J. Kim (Yongin, Republic of Korea), J. Lee (Yongin, Republic of Korea), S. Kang (Yongin, Republic of Korea), J. Jung (Yongin, Republic of Korea), H. Koo (Yongin, Republic of Korea), J. Park (Yongin, Republic of Korea)
Estimating long-term survival in progressive fibrosing interstitial lung disease (PF-ILD) other than IPF using matched IPF data T. Maher (Los Angeles, United States of America), B. Langford (London, United Kingdom), A. Diamantopoulos (London, United Kingdom), K. Rohr (Ingelheim am Rhein, Germany), M. Baldwin (Ingelheim am Rhein, Germany), Y. Inoue (Osaka, Japan)
Specifying pediatric pulmonary hemorrhage: Suggestion of a diagnostic algorithm as guide to disease subcategories K. Knoflach (Munich, Germany), C. Rapp (Munich, Germany), E. Seidl (Munich, Germany), N. Schwerk (Hannover, Germany), M. Wetzke (Hannover, Germany), J. Carlens (Hannover, Germany), N. Kiper (Ankara, Turkey), N. Emiralioglu (Ankara, Turkey), F. Buchvald (Copenhagen, Denmark), A. Madsen Ring (Copenhagen, Denmark), P. Robinson (Farmington, CT, United States of America), M. Griese (Munich, Germany)
Diffuse Pulmonary Non-Amyloid Light-Chain Deposition Disease: Phenotypes and Outcome F. Lestelle (Lyon, France), M. Nasser (Lyon, France), A. Roux (Suresnes, France), S. Hirschi (Strasbourg, France), L. Wemeau (Lille, France), G. Prévot (Toulouse, France), D. Rotzinger (Lausanne, Switzerland), S. Si-Mohamed (Lyon, France), V. Bunel (Paris, France), E. Gomez (Nancy, France), L. Sohier (Lorient, France), H. Morisse Pradier (Rouen, France), M. Reynaud Gaubert (Marseille, France), A. Gondouin (Besançon, France), R. Lazor (Lausanne, Switzerland), Y. Uzunhan (Bobigny, France), P. Rigaud (Paris, France), M. Colombat (Toulouse, France), C. Beigelman (Lausanne, Switzerland), V. Cottin (Lyon, Switzerland)
Granulomatous-Lymphocytic Interstitial Lung Disease (GLILD): an international research prioritisation H. Bintalib (London, United Kingdom), S. Abbas (London, United Kingdom), K. Warnatz (Freiburg, Germany), J. Hurst (and On Behalf Of The Eglildnet Consortium) (London, United Kingdom)
Assessment of fibrosis in lung biopsies from the European childhood interstitial lung disease (chILD) registry M. Griese (Munich, Germany), E. Seidl (Munich, Germany), K. Knoflach (Munich, Germany), J. Ley-Zaporozhan (Munich, Germany), B. Kammer (Munich, Germany), I. Krueger-Stollfuss (Munich, Germany), S. Reu-Hofer (Wuerzburg, Germany), N. Schwerk (Hannover, Germany), J. Carlens (Hannover, Germany), M. Wetzke (Hannover, Germany), N. Emiralioglu (Ankara, Turkey), N. Kiper (Ankara, Turkey), F. Stehling (Essen, Germany), J. Lange (Warsaw, Poland), K. Krenke (Warsaw, Poland)
A rare case of oligometastatic disease G. Hardavella (Athens, Greece)
Rare lung diseases and work: always bear occupation in mind when assessing these patients D. Vinnikov (Almaty, Kazakhstan)
Why should we care for the vessels in interstitial lung disease? H. Olschewski (Graz, Austria)
Disease patterns in connective tissue disease-associated interstitial lung disease: a population based study C. Hyldgaard (Silkeborg, Denmark), E. Bendstrup (Aarhus, Denmark), A. Pedersen (Aarhus, Denmark), L. Pedersen (Aarhus, Denmark), T. Ellingsen (Odense, Denmark)
Infections in children: is there an underlying rare disease? J. Grigg (London, United Kingdom)
Pulmonary Lymphangiomatosis – insights into an ultra-rare disease N. Sarmand (Heidelberg, Germany), S. Piel (Heidelberg, Germany), E. Brunnemer (Heidelberg, Germany), J. Waelscher (Heidelberg, Germany), M. Polke (Heidelberg, Germany), A. Warth (Heidelberg, Germany), C. Heussel (Heidelberg, Germany), M. Eichinger (Heidelberg, Germany), F. Lasistschka (Heidelberg, Germany), B. Hoegerle (Heidelberg, Germany), L. Frankenstein (Heidelberg, Germany), H. Zabeck (Heidelberg, Germany), S. Rieken (Heidelberg, Germany), F. Herth (Heidelberg, Germany), M. Kreuter (Heidelberg, Germany)
Unclassifiable interstitial lung disease: a distinct entity with heterogeneous progression M. Nasser (Lyon, France), P. Rigaud (Lyon, France), K. Ahmad (Lyon, France), J. Traclet (Lyon, France), V. Cottin (Lyon, France)
Pleural effusion in patients with IgG4-related disease: new insights from a case series O. Wand (Petah Tiqwa, Israel), O. Moreh Rahav (Petah Tiqwa, Israel), O. Shtraichman (Petah Tiqwa, Israel), M. Kramer (Petah Tiqwa, Israel)
Rare diseases registries such as the Rare Lung Disease Registry Data Warehouse H. Storf (Frankfurt, Germany)
From childhood to adulthood: growing up with a rare lung disease such as cystic fibrosis C. van der Ent (Utrecht, Netherlands)
Rare interstitial lung diseases (LAM, LHC, alveolar proteinosis, eosinophilic pneumonias) B. Crestani (Paris, France)
Evaluating disease-modifying treatment in CF: are we ready to take the challenge? I. Eichler (London, United Kingdom)
Why are clinical trials in critically-ill respiratory patients relatively uninformative? P. Pelosi (Genoa, Italy)
Do the current endpoints in IPF clinical trials allow good regulatory decisions to be made? P. Noble (Durham, United States of America)