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Articles 2 registres trobats  
1.
13 p, 1.6 MB Diffuse alveolar haemorrhage in children : an international multicentre study / Ring, Astrid Madsen (University of Copenhagen) ; Schwerk, Nicolaus (German Center for Lung Research (DZL)) ; Kiper, Nural (Hacettepe University Faculty of Medicine) ; Aslan, Ayse Tana (Gazi University Faculty of Medicine) ; Aurora, Paul (Great Ormond Street Hospital for Children (Londres)) ; Ayats-Vidal, Roser (Parc Taulí Hospital Universitari. Institut d'Investigació i Innovació Parc Taulí (I3PT)) ; Azevedo, Ines (Universidade do Porto and Serviço de Pediatria) ; Bandeira, Teresa (Centro Hospitalar Universitário Lisboa Norte) ; Carlens, Julia (German Center for Lung Research (DZL)) ; Castillo-Corullón, Silvia (Hospital Clínic Universitari (València)) ; Cobanoglu, Nazan (Ankara University Faculty of Medicine) ; Elnazir, Basil (CHI at Tallaght University Hospital (Dublin)) ; Emiralioglu, Nagehan (Hacettepe University Faculty of Medicine) ; Eyuboglu, Tugba Sismanlar (Gazi University Faculty of Medicine) ; Fayon, Michael (CHU Bordeaux) ; Gursoy, Tugba Ramaslı (Gazi University Faculty of Medicine) ; Hogg, Claire (Royal Brompton Hospital (Londres)) ; Kötz, Karsten (University of Gothenburg) ; Karadag, Bülent (Marmara University Faculty of Medicine (Turquía)) ; Látalová, Vendula (University Hospital Olomouc (Olomouc, República Txeca)) ; Krenke, Katarzyna (Medical University of Warsaw) ; Lange, Joanna (Medical University of Warsaw) ; Manali, Effrosyni D. (Athens Medical School) ; Osona, Borja (Hospital Universitari Son Espases (Palma de Mallorca, Balears)) ; Papiris, Spyros (2nd National and Kapodistrian University of Athens) ; Proesmann, Marijke (KUL UZ Gasthuisberg) ; Reix, Philippe (Université de Lyon) ; Roditis, Lea (Children's University Hospital (França)) ; Rubak, Sune (Aarhus University Hospital (Aarhus, Dinamarca)) ; Rumman, Nisreen (Makassed Hospital) ; Snijders, Deborah (Università degli Studi di Padova) ; Stehling, Florian (University Hospital Essen (Alemanya)) ; Weiss, Laurence (Strasbourg University) ; Yalcın, Ebru (Hacettepe University Faculty of Medicine) ; Zirek, Fazilcan (Ankara University Faculty of Medicine) ; Bush, Andrew (Imperial College London and Paediatric Respiratory Medicine) ; Clement, Annick (Sorbonne Université) ; Griese, Matthias (University of Copenhagen) ; Buchvald, Frederik Fouirnaies (University of Copenhagen) ; Nathan, Nadia ; Nielsen, Kim G ; Universitat Autònoma de Barcelona
Paediatric diffuse alveolar haemorrhage (DAH) is a rare heterogeneous condition with limited knowledge on clinical presentation, treatment and outcome. A retrospective, descriptive multicentre follow-up study initiated from the European network for translational research in children's and adult interstitial lung disease (Cost Action CA16125) and chILD-EU CRC (the European Research Collaboration for Children's Interstitial Lung Disease). [...]
2023 - 10.1183/23120541.00733-2022
ERJ Open Research, Vol. 9 (april 2023)  
Registre complet - Creative Commons
2.
5 p, 611.5 KB Access to medicines for rare diseases : beating the drum for primary ciliary dyskinesia / Crowley, Suzanne (Oslo University Hospital (Oslo, Noruega)) ; Azevedo, Ines (Universidade do Porto) ; Boon, Mieke (University Hospitals Gasthuisberg (Leuven, Bélgica)) ; Bush, Andrew (Royal Brompton Hospital (Londres)) ; Eber, Ernst (Medical University of Graz) ; Haarman, Eric (Amsterdam UMC. University Medical Center) ; Karadag, Bulent (Marmara University) ; Kötz, Karsten (Sahlgrenska University Hospital (Suècia)) ; Leigh, Margaret (University of North Carolina at Chapel Hill) ; Moreno Galdó, Antonio (Universitat Autònoma de Barcelona. Departament de Pediatria, Obstetrícia i Ginecologia i de Medicina Preventiva i Salut Pública) ; Mussaffi, Huda (Tel Aviv University) ; Nielsen, Kim G. ; Omran, Heymut (University Hospital Muenster (Alemanya)) ; Papon, Jean-François (Hôpital Kremlin-Bicetre) ; Pohunek, Petr (Charles University. Faculty of Medicine in Hradec Králové) ; Priftis, Kostas (University General Hospital Attikon (Haidari, Grècia)) ; Rindlisbacher, Bernhard (Patient Association Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V., Steffisburg, Switzerland) ; Santamaria, Francesca (Federico II University) ; Valiulis, Arunas (European Academy of Paediatrics (Bélgica)) ; Witt, Michal (Institute of Human Genetics Polish Academy of Sciences(Polònia)) ; Yiallouros, Panayiotis (University of Cyprus) ; Zivkovic, Zorica (Novi Sad (Sèrbia)) ; Kuehni, Claudia E. (University Children's Hospital Bern (Suïssa)) ; Lucas, Jane S. (University Hospital Southampton NHS Foundation Trust (Regne Unit))
Rare diseases are collectively common, affecting an estimated 6. 2% of the world's population [1], but each rare disease affects fewer than 4 to 5 in 10 000 individuals in Europe or less than 200 000 individuals in the USA [2]. [...]
2020 - 10.1183/23120541.00377-2020
ERJ Open Research, Vol. 6 (september 2020)  
Registre complet - Creative Commons

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