LCH is a rare disease potentially resulting in death or permanent sequelae. The burden of therapy may also be extremely heavy. There is an obvious need for a full assessment of each patient with a rational treatment tailored to the risks of the individual patient, which contributes to further fundamental and clinical research in this field.
Progress may be expected from collaborations organized at national and international levels, among specialist groups and expert networks. Collection of tissue and blood samples in biobanks is essential for improving the understanding of the biology of this rare and fascinating condition. New international protocols will soon be opened and continue to represent an opportunity to develop global research in LCH (see www.histiocytesociety.org and www.histio.net).
Euro Histio Net Partners—Institutions
Euro Histio Net is a project funded by the European Commission/DG Sanco and associated both medical institutions and patients associations as listed below. 1 Reference Centre for Histiocytosis, Hopital Trousseau, Assistance Publique – Hopitaux de Paris, France. Jean Donadieu, MD, PhD, Coordinator, Abdelatif Tazi, MD, PhD, Jean François Emile, MD, PhD, Milen Minkov, MD, PhD, Associated Partners, 2 Hospital Universitario Cruces Barakaldo, Spain. Itziar Astigarraga, MD, Associated Partner, 3 Children's Cancer Research Institute, St. Anna Children's Hospital, Vienna, Austria. 4 Istituto G. Gaslini, Genova, Italy. Riccardo Haupt, MD, Associated Partner, 5 Johns Hopkins, Baltimore, Maryland, USA. Robert J. Arceci, MD, PhD, Collaborating Partner, 6 Azienda Ospedaliero-Universitaria Meyer, Firenze, Italy. Maurizio Aricò, MD, PhD, Collaborating Partner, 7 Elisabethinen Hospital, Linz, Austria. Michael Girschikofsky, MD, Collaborating Partner, 8 Karolinska Institutet, Stockholm, Sweden. Jan-Inge Henter, MD, PhD, Collaborating Partner, 9 Children's University Hospital, Hamburg, Germany. Gritta Janka, MD, PhD, Collaborating Partner, 10 Hotel Dieu de France Hospital, Beirut, Lebanon. Claudia Djambas Khayat, MD, Collaborating Partner, 11 Hellenic Air Force & Veterans General Hospital, Athens, Greece. Polyzois Makras, MD, PhD, Collaborating Partner, 12 Hospital de Clínicas de Porto Alegre, Brasil. Mariana Michalowski, MD, Collaborating Partner, 13 Watford General Hospital, Watford, UK. Vasanta Nanduri, MD, Collaborating Partner, 14 Dana Farber Cancer Institute and Childrens Hospital, Boston, Massachusetts, USA. Carlos Rodriguez-Galindo, MD, Collaborating Partner, 15 Medical University Plovdiv, Bulgaria. Mariya Spasova, MD, PhD, Associate Professor, Collaborating Partner, 16 University Pediatric Hospital, Lublin, Poland. Maria Jolanta Stefaniak, MD, PhD, Collaborating Partner, 17 UZ Leuven, Leuven, Belgium. Stefaan Van Gool, MD, PhD, Collaborating Partner, 18 University Hospitals of Leicester, Leicester Royal Infirmary Childrens Hospital, Leicester, United Kingdom. Johann Visser, MD, Collaborating Partner, 19 Hospital for Sick Children, Toronto, Ontario, Canada. Sheila Weitzman, MD, Collaborating Partner, 20 Newcastle University, Newcastle, United Kingdom. Kevin Patrick Windebank, MD, Collaborating Partner, 21 Clinique Al Madina, Casablanca, Morocco. Saadia Zafad, MD, PhD, Collaborating Partner.
Euro Histio Net Partners—Patient Associations
1 The Histiocytosis Research Trust, United Kingdom, www.hrtrust.org Associated Partner; 2 Artemis Association on Histiocytoses, Greece, www.histioartemis.gr Collaborating Partner; 3 Asociacion Espanola contra la Histiocitosis de celulas de Langerhans (ACHE), Spain, www.histiocitosis.org Collaborating Partner; 4 Association Histiocytose France (A.H.F.), France, www.histiocytose.org Collaborating Partner; 5 Associazione italiana ricerca istiocitosi (AIRI LCH onlus), Italy, www.istiocitosi.org Collaborating Partner; 6 Erwachsenen Histiozytose X e.V (EHX e.V.)., Germany, www.histiozytose.com Collaborating Partner; 7 Föräldraföreningen För Histiocytos (Ffh), Sweden, www.histiocytos.se Collaborating Partner; 8 Histiocytosis Association of America (HAA), USA, www.histio.org Collaborating Partner; 9 Histiozytosehilfe e.V., Germany, www.histiozytose.org Collaborating Partner; 10 LCH-Belgium, Belgium, www.lch.be Collaborating Partner; 11 The ECD Global Alliance, USA, www.erdheim-chester.org Collaborating Partner.