Expert services for rare anaemias across Europe by Beatrice Gulbis

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Sickle Cell Disease in the Democratic Republic of Congo: Assessing Physicians’ Knowledge and Practices by Benoît Mukinayi Mbiya, Ghislain Tumba Disashi, Béatrice Gulbis

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e-ENERCA: telemedicine platform for rare anaemias by Béatrice Gulbis, María del Mar Mañú Pereira, Emilio J. Armaza Armaza, Pilar Nicolás, for the ENERCA working group

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Improvement of SCD morbimortality in children: experience in a remote area of an African country by Benoît Mukinayi Mbiya, Didier Kalenda Kalombo, Yannick Nkesu Mukendi, Valery Daubie, John Kalenda Mpoyi, Parola Mukendi Biboyi, Ghislain Tumba Disashi, Béatrice Gulbis

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Neonatal Screening for Sickle Cell Disease in Belgium for More than 20 Years: An Experience for Comprehensive Care Improvement by Béatrice Gulbis, Phu-Quoc Lê, Olivier Ketelslegers, Marie-Françoise Dresse, Anne-Sophie Adam, Frédéric Cotton, François Boemer, Vincent Bours, Jean-Marc Minon, Alina Ferster

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Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience by Mariangela Pellegrini, Subarna Chakravorty, Maria del Mar Manu Pereira, Beatrice Gulbis, Catriona Gilmour-Hamilton, Sandy Hayes, Mariane de Montalembert, Baba Psalm Duniya Inusa, Raffaella Colombatti, Noémi BA Roy

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Newborn Screening for Sickle Cell Disease in Europe by Yvonne Daniel, Jacques Elion, Bichr Allaf, Catherine Badens, Marelle J. Bouva, Ian Brincat, Elena Cela, Cathy Coppinger, Mariane de Montalembert, Béatrice Gulbis, Joan Henthorn, Olivier Ketelslegers, Corrina McMahon, Allison Streetly, Raffaella Colombatti, Stephan Lobitz

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Recommendations for centres of expertise in rare anaemias. The ENERCA White Book by Joan-Lluis Vives Corrons, María del Mar Mañú Pereira, Carlos Romeo-Casabona, Pilar Nicolás, Béatrice Gulbis, Androulla Eleftheriou, Michael Angastiniotis, Patricia Aguilar Martínez, Paola Bianchi, Richard Van Wijk, Hermann Heimpel, Barbara De la Salle, Andrea Mosca

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Newborn screening for sickle cell disease in Kisangani, Democratic Republic of the Congo: an update by Emmanuel Tebandite Kasai, Béatrice Gulbis, Justin Kadima Ntukamunda, Vincent Bours, Salomon Batina Agasa, Roland Marini Djang’eing’a, François Boemer, Gedeon Katenga Bosunga, Nestor Ngbonda Dauly, La Joie Sokoni Vutseme, Bosco Boso Mokili, Jean Pierre Alworong’a Opara

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Time for Change? The Why, What and How of Promoting Innovation to Tackle Rare Diseases – Is It Time to Update the EU’s Orphan Regulation? And if so, What Should be Changed? by Denis Horgan, Barbara Moss, Stefania Boccia, Maurizio Genuardi, Maciej Gajewski, Gabriele Capurso, Pierre Fenaux, Beatrice Gulbis, Mariangela Pellegrini, Maria del Mar Mañú Pereira, Victoria Gutiérrez Valle, Iñaki  Gutiérrez Ibarluzea, Alastair Kent, Ivana Cattaneo, Beata Jagielska, Ivica Belina, Birute Tumiene, Adrian Ward, Marisa Papaluca

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Recommendations for Pregnancy in Rare Inherited Anemias by Ali T. Taher, Achille Iolascon, Charbel F. Matar, Rayan Bou-Fakhredin, Lucia de Franceschi, Maria Domenica Cappellini, Wilma Barcellini, Roberta Russo, Immacolata Andolfo, Paul Tyan, Beatrice Gulbis, Yesim Aydinok, Nicholas P. Anagnou, Gabriela Amstad Bencaiova, Hannah Tamary, Patricia Aguilar Martinez, Gianluca Forni, Raffaele Vindigni, on behalf of the EHA Scientific Working Group on “Red Cells, Iron”

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Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions by Nathalie M. Vandevelde, Pieter Vermeersch, Katrien M. J. Devreese, Marie-Françoise Vincent, Béatrice Gulbis, François Eyskens, François Boemer, André Gothot, Viviane O. Van Hoof, Carolien Bonroy, Hedwig Stepman, Geert A. Martens, Xavier Bossuyt, Laurence Roosens, Julie Smet, Hilde Laeremans, Ilse Weets, Jean-Marc Minon, Kris Vernelen, Wim Coucke, Advisory Board of the Action 1 of the Belgian National Plan for Rare Diseases

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P1427: RARE ANAEMIA DISORDERS EUROPEAN EPIDEMIOLOGICAL PLATFORM (RADEEP): DISTRIBUTION OF PATIENTS AFFECTED BY RADS IN EUROPE by José Martín Solórzano González, Sara Isabel Reidel, Ines Labidi, Claire Diot Lefebvre, Stella Tamana, Victoria Gutierrez Valle, Eduard van Beers, Raffaella Colombatti, Paola Bianchi, Angelo Loris Brunetta, Dore Peereboom, Frédéric Galactéros, Giovanna Russo, Antonis Kattamis, Laurence Dedeken, Joachim Kunz, Elena Cela, Celeste Bento, Ulf Tedgard, Andreas Glenthøj, Soteroula Christou, Marina Kleanthous, Petros Kountouris, Beatrice Gulbis, Maria Del Mar Mañú Pereira

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