Working groups

Besides working packages the project is divided in 5 cross-cutting working groups or vertical themes. These themes focus on integration of EuRR-Bone with EuRRECa and 4 specific diseases: Fibrous Dysplasia/McCune Albright Syndrome, X-linked Hypophosphatemic Rickets, Osteogenesis Imperfecta and Achondroplasia.

Working group/Vertical Theme 1: Integration EuRRECa and EuRR-Bone (Core and e-REC)

Lead:
prof S. Faisal Ahmed
pediatric endocrinologist and coordinator EuRRECaGlasgow University,
Glasgow United Kingdom
dr. Natasha Appelman-Dijkstraendocrinologist, coordinator EuRR-BoneLeiden University Medical Center,
Leiden the Netherlands
dr. Luca Sangiorgiclinical geneticist, coordinator of ERN BONDIOR Rizzoli
Bologna Italy

Working group/Vertical Theme 2: Fibrous Dysplasia/McCune Albright syndrome

Lead: dr. Natasha Appelman-Dijkstraendocrinologist, coordinator EuRR-Bone Leiden University Medical Center,
Leiden the Netherlands
prof. Roland ChapurlatreumatologistINSERM
Lyon, France
Gaby Doxiadispatient representativeDutch FD/MAS foundation
dr. Kassim Javaid reumatologistNDORMS , University of Oxford
Oxford United Kingdom,
dr.Diana Ovejero CrespoendocrinologistHospital del Mar,
Barcelona Spain,
dr. Danielle Tessaris,pediatric endocrinologist,Regina Margherita Children’s Hospital
Turin, Italy
Jamie Watsonpatient representativeFibrous Dysplasia Support Society UK
Nerea Arrieta Urriategipatient representativeFibrous Dysplasia Spain
Dr. Lothar Seefriedorthopedic surgeonUniversity Hospital at the Julius-Maximilians University 
Würzburg, Germany

Working group/Vertical Theme 3: Osteogenesis Imperfecta

Lead:
Prof. Wolfgang Högler
paediatric endocrinologistJohannes Kepler University
Linz, Austria
Prof Dr. Ralf Oheim,osteologistUniversitätsklinikum Hamburg-Eppendorf, ,
Hamburg, Germany,
Mrs. Rebecca Skarberg-Tvedtpatient representative and ePAG ERN BONDOIFE
Ms Ingunn Westerheimpatient representativeOIFE
Dr. Eva Åström,pediatricianKarolinska Institutet,
Stockholm, Sweden
Dr. Meena Balasubramanianclinical geneticistSheffield Childrens Hospital,
Sheffield, United Kingdom
Dr. Hans-Georg Zmierczak,rheumatologistUniversity Hospital Ghent,
Ghent Belgium
Prof. Dr. Carola ZillikensendocrinologistErasmus Medical Center
Rotterdam, The Netherlands
Dr. Anton Franken,endocrinologistIsala Clinics
Zwolle the Netherlands,
mrs Claudia Finispatient representativeOI foundation Germany
mr. Taco van Welzenis patient representativeOI foundation the Netherlands.
mrs Dagmar Mekkingrepresentative and project manager Key4OICare4Brittle Bones

Working group/Vertical Theme 5: Rare Hypophosphatemia

Lead:
Prof. dr. Agnès Lighart
pediatric endocrinologistCHU Paris-Sud – Hôpital de Bicêtre,
Paris France
Prof. dr. Carola ZillikensendocrinologistErasmus Medical Center
Rotterdam, The Netherlands
Prof. dr. Maria Luisa BrandiendocrinologistUniversity of Florence, Medical School, 
Florence, Italy
Tenna Toftpatient representative and ePAG ERN BONDXLH Alliance


Working group/Vertical Theme 5: Achondroplasia

Lead: prof. Klaus Mohnike pediatric endocrinologistOtto-von-Guericke-University Magdeburg,
Magdebrug Germany
dr. Genevieve Baujatclinical geneticistUniversité Paris Descartes-Sorbonne Paris Cité,
Hôpital Necker-Enfants malades, AP-HP, Paris, France
ms Ines Alvespatient representative and ePAG ERN BOND ANDO Portugal.
Prof dr. Geert Mortier, clinical geneticistCentrum Medisch Genetica, UZA/UA,
Antwerpen, Belgium
dr. Svein O. Fredwall Senior Medical ConsultantTRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital, Nesodden Norway
mr Marco Sessa patient representative Achondroplasia foundation Italy
dr Maria Francesca Bedeschiclinical geneticistFondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy