The Partners Of The Histio Net Project

Author(s): E. Schaefer, Created: 2010/07/20, Reviewed by: I. Astigarraga, J. Donadieu, R. Haupt, M. Minkov, R. Price, last update: 2011/09/02

More than 30 international experts and representatives of patients associations dealing with histiocytosis contribute to the Histio Net project.

Coordinator

Dr. Jean Donadieu
Email: jean(dot)donadieu(at)trs(dot)aphp(dot)fr
Reference Centre for Histiocytosis at Hopital Trousseau,
Assistance Publique – Hopitaux de Paris, France - www.aphp.fr

Associated Partners

Dr. Itziar Astigarraga
E-mail: itziar(dot)astigarraga(at)osakidetza(dot)net
Fundación Vasca de Innovación e Investigación Sanitarias (BIOEF)
www.bioef.org
Hospital de Cruces, Barakaldo, Spain - www.hospitalcruces.com

Dr. Riccardo Haupt
E-mail: riccardohaupt(at)ospedale-gaslini(dot)ge(dot)it
Istituto G. Gaslini in Genova, Italy - www.gaslini.org

Dr. Milen Minkov
E-mail: lch(at)ccri(dot)at
Children’s Cancer Research Institute, Vienna, Austria - www.ccri.at
St. Anna Children’s Hospital, Vienna, Austria - www.stanna.at

Richard Price
E-mail: Richard(at)hrtrust(dot)org
The Histiocytosis Research Trust - www.hrtrust.org

Collaborating Partners - Physicians

Robert J. Arceci, M.D., Ph.D
Email: arcecro(at)jhmi(dot)edu
Johns Hopkins, Baltimore, Maryland, USA
www.hopkinsmedicine.org/kimmel_cancer_center/
-> Content, Scientific and Clinical Oversight

Prof. Maurizio Aricò
Tel. +39 055 5662739, Fax +39 055 5662746, Email: m(dot)arico(at)meyer(dot)it
Direttore del Dipartimento Oncoematologia Pediatrica, Azienda Ospedaliero-Universitaria Meyer,
Viale Peraccini, 24, Firenze, Italy

Michael Girschikofsky, MD
Email: michael(dot)girschikofsky(at)elisabethinen(dot)or(dot)at
Elisabethinen Hospital, Linz, Austria - www.elisabethinen.or.at
Austrian Working Group for Histiocytic Diseases in Adults
-> Contact person for adult patients

Prof. Jan-Inge Henter
Email: Jan-Inge(dot)Henter(at)ki(dot)se
Karolinska Institutet, Stockholm, Sweden

Gritta Janka, MD, PhD
Email: janka(at)uke(dot)de
Children's University Hospital, Hamburg, Germany
www.uke.de
-> Consultations

Claudia Djambas Khayat, MD
Email: claudiakhayat(at)yahoo(dot)fr
Hotel Dieu de France Hospital, Beirut, Lebanon

Polyzois Makras, MD, PhD
Email: makras(at)internet(dot)gr
251 Hellenic Air Force & Veterans General Hospital, Athens, Greece
-> Endocrinologist

Dr. Mariana Michalowski
Email: mmichalowski(at)hcpa(dot)ufrgs(dot)br
Hospital de Clínicas de Porto Alegre, Brasil
www.hcpa.ufrgs.br

Dr. Vasanta Nanduri
Email: vasanta(dot)nanduri(at)whht(dot)nhs(dot)uk
Watford General Hospital, Watford, UK
www.westhertshospitals.nhs.uk
-> Collaborating in development of guidelines, longterm follow up

Carlos Rodriguez-Galindo, M.D.
Email: Carlos_Rodriguez-Galindo(at)DFCI(dot)Harvard(dot)edu
Dana Farber Cancer Institute and Childrens Hospital, Boston, Massachusetts, USA
www.DFCI.org
-> Consultant

Mariya Spasova, MD, PhD, Associate Professor
Email: merispa(at)mail(dot)bg
Medical University Plovdiv, Bulgaria - Webpage
-> Contribution to translations to Bulgarian

Maria Jolanta Stefaniak, MD, PhD
Email: jolastef(at)dsk(dot)lublin(dot)pl
University Pediatric Hospital, Lublin, Poland - www.umlub.pl
-> Contribution to translations to Polish and collection and transfer of data concerning Polish patients with LCH and HLH

Prof. Dr. Stefaan Van Gool
Email: stefaan(dot)vangool(at)uz(dot)kuleuven(dot)be
UZ Leuven, Leuven, Belgium - www.uzleuven.be

Dr. Johannes Visser
Email: johannes(dot)visser(at)uhl-tr(dot)nhs(dot)uk
University Hospitals of Leicester, Leicester Royal Infirmary Childrens Hospital, Leicester, United Kingdom

Dr. Sheila Weitzman
Email: sheila(dot)weitzman(at)sickkids(dot)ca
Hospital for Sick Children, Toronto, Ontario, Canada
-> Contribution to guidelines and information on the Histio Net website for professionals and for patients.

Dr. Kevin Patrick Windebank
Email: k(dot)p(dot)windebank(at)ncl(dot)ac(dot)uk
Newcastle University, Newcastle, United Kingdom
www.ncl.ac.uk
-> Website content, Discussion of complex patients with colleagues, Consultation with patients

Saadia Zafad
Email: szafad(at)hotmail(dot)com
Clinique Al Madina, Casablanca, Morocco
-> Data exchange, Participation in meetings

Collaborating Partners - Patient Associations

Artemis Association on Histiocytoses, Greece
www.histioartemis.gr
Contact: Mrs. Dora Moustaka, Email: info(at)histioartemis(dot)gr
and Mr. Elias Baxevanidis, Email: el(dot)baxevanidis(at)gmail(dot)com

Asociacion Espanola contra la Histiocitosis de celulas de Langerhans (ACHE), Spain
www.histiocitosis.org

Association Histiocytose France (A.H.F.), France
www.histiocytose.org
Contact: Mrs. Lydia Debar
Email: debarly(at)voila(dot)fr

Associazione italiana ricerca istiocitosi (AIRI LCH onlus), Italy
www.istiocitosi.org
Contact: Ms. Marisa De Carli, President
and Mr. Franco Sponchiado, Vice-President
Email: onlus(at)istiocitosi(dot)org

Erwachsenen Histiozytose X e.V (EHX e.V.)., Germany
www.histiozytose.com
www.LCH-Register.org
Contact: Mrs. Dagmar Kauschka, Chairwoman
Email: d(dot)kauschka(at)ehx-ev(dot)de

Föräldraföreningen För Histiocytos (Ffh), Sweden
www.histiocytos.se

Histiocytosis Association of America (HAA), USA
www.histio.org

Histiozytosehilfe e.V., Germany
www.histiozytose.org

LCH-Belgium, Belgium
www.lch.be

The ECD Global Alliance, USA
www.erdheim-chester.org
Contact: Kathy Brewer
Email: support(at)erdheim-chester(dot)org