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

Vertical Theme 1: Integration EuRRECa and EuRR-Bone (Core and e-REC)
Lead: prof S. Faisal Ahmed | pediatric endocrinologist and coordinator EuRRECa | Glasgow University, Glasgow United Kingdom |
dr. Natasha Appelman-Dijkstra | endocrinologist, coordinator EuRR-Bone | Leiden University Medical Center, Leiden the Netherlands |
dr. Luca Sangiorgi | clinical geneticist, coordinator of ERN BOND | IOR Rizzoli Bologna Italy |
Charlotte van Beuzekom | Project manager EuRR-Bone | Leiden University Medical Center, Leiden the Netherlands |
Jillian Bryce | Project manager EuRRECa | Glasgow University, Glasgow United Kingdom |
Ana Luisa Priego Zurita | EuRR-Bone/EuRRECa fellow | Leiden University Medical Center, Leiden the Netherlands |
Vertical Theme 2: Fibrous Dysplasia/McCune Albright syndrome
Lead: dr. Natasha Appelman-Dijkstra | endocrinologist, coordinator EuRR-Bone | Leiden University Medical Center, Leiden the Netherlands |
prof. Roland Chapurlat | reumatologist | INSERM Lyon, France |
Gaby Doxiadis | patient representative | Dutch FD/MAS foundation |
dr. Kassim Javaid | reumatologist | NDORMS , University of Oxford Oxford United Kingdom, |
dr.Diana Ovejero Crespo | endocrinologist | Hospital del Mar, Barcelona Spain, |
dr. Danielle Tessaris, | pediatric endocrinologist, | Regina Margherita Children’s Hospital Turin, Italy |
Jamie Watson | patient representative | Fibrous Dysplasia Support Society UK |
Nerea Arrieta Urriategi Magdalena Caballero Campos | patient representatives | Fibrous Dysplasia Spain |
Ana Luisa Priego Zurita | EuRR-Bone/EuRRECa fellow | Leiden University Medical Center, Leiden the Netherlands |
Dr. Lothar Seefried | orthopedic surgeon | University Hospital at the Julius-Maximilians University Würzburg, Germany |
Vertical Theme 3: Osteogenesis Imperfecta
Lead: Prof. Wolfgang Högler | paediatric endocrinologist | Johannes Kepler University Linz, Austria |
Prof Dr. Ralf Oheim, | osteologist | Universitätsklinikum Hamburg-Eppendorf, , Hamburg, Germany, |
Mrs. Rebecca Skarberg-Tvedt | patient representative and ePAG ERN BOND | OIFE |
Ms Ingunn Westerheim | patient representative | OIFE |
Dr. Eva Åström, | pediatrician | Karolinska Institutet, Stockholm, Sweden |
Dr. Meena Balasubramanian | clinical geneticist | Sheffield Childrens Hospital, Sheffield, United Kingdom |
Dr. Hans-Georg Zmierczak, | rheumatologist | University Hospital Ghent, Ghent Belgium |
Prof. Dr. Carola Zillikens | endocrinologist | Erasmus Medical Center Rotterdam, The Netherlands |
Dr. Anton Franken, | endocrinologist | Isala Clinics Zwolle the Netherlands, |
mrs Claudia Finis | patient representative | OI foundation Germany |
mr. Taco van Welzenis | patient representative | OI foundation the Netherlands. |
mrs Dagmar Mekking | representative and project manager Key4OI | Care4Brittle Bones |
Vertical Theme 4: Rare Hypophosphatemia
Lead: Prof. dr. Agnès Lignart | pediatric endocrinologist | CHU Paris-Sud – Hôpital de Bicêtre, Paris France |
dr. Diana Alexandra Ertl | pediatric endocrinologist | CHU Paris-Sud – Hôpital de Bicêtre, Paris France and Medical University of Vienna, Vienna Austria |
Prof. dr. Carola Zillikens | endocrinologist | Erasmus Medical Center Rotterdam, The Netherlands |
Prof. dr. Maria Luisa Brandi | endocrinologist | University of Florence, Medical School, Florence, Italy |
dr. Adalbert Raimann | pediatric endocrinologist | Medical University of Vienna, Vienna Austria |
Oliver Gardner | patient representative | XLH Alliance |
Ana Luisa Priego Zurita | EuRR-Bone/EuRRECa | Leiden University Medical Center, Leiden the Netherlands |
Tenna Toft | patient representative and ePAG ERN BOND | XLH Alliance |
Vertical Theme 5: Achondroplasia
Lead: prof. Klaus Mohnike | pediatric endocrinologist | Otto-von-Guericke-University Magdeburg, Magdebrug Germany |
dr. Genevieve Baujat | clinical geneticist | Université Paris Descartes-Sorbonne Paris Cité, Hôpital Necker-Enfants malades, AP-HP, Paris, France |
ms Ines Alves | patient representative and ePAG ERN BOND | ANDO Portugal. |
Prof dr. Geert Mortier, | clinical geneticist | Centrum Medisch Genetica, UZA/UA, Antwerpen, Belgium |
dr. Svein O. Fredwall | Senior Medical Consultant | TRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital, Nesodden Norway |
mr Marco Sessa | patient representative | Achondroplasia foundation Italy |
dr Maria Francesca Bedeschi | clinical geneticist | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy |