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 |
Rebecca Skarberg-Tvedt | patient representative and ePAG ERN BOND | OIFE |
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, |
Claudia Finis | patient representative | OI foundation Germany |
Taco van Welzenis | patient representative | OI foundation the Netherlands |
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 | Fondazione FIRMO Onlus, Fondazione Italiana per la Ricerca sulle Malattie dell’Osso, Donatello Bone Clinic, Casa di Cura Villa Donatello, Sesto Fiorentino, Florence, Italy |
dr. Adalbert Raimann | pediatric endocrinologist | Medical University of Vienna, Vienna, Austria |
Oliver Gardiner | 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 |
Martha Kirchhof | patient representative and ePAG Endo-ERN | Phosphatdiabetes E.V. |
dr. Gabriel Mindler | pediatric orthopedic surgeon | Orthopedic Hospital Speising and Vienna Bone and Growth Center, Vienna, Austria |
dr. Marine de Tienda | pediatric orthopaedic surgeon | CHU Necker Enfants Malades, Paris, France |
prof. Karine Briot | rheumatologist | Cochin Hospital, Paris, France |
dr. Peter Kamenicky | endocrinologist | Bicêtre Paris-Sud Hospital, Paris, France |
dr. Ola Nilsson | pediatric endocrinologist | Karolinska Institute, Stockholm, Sweden |
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, Paris, France |
Ines Alves | patient representative and ePAG ERN BOND | ANDO Portugal |
prof. dr. Geert Mortier | clinical geneticist | Center for Human Genetics University Hospitals Leuven Leuven, Belgium |
dr. Carmen Vleggeert-Lankamp | neurosurgeon | Leiden University Medical Center, Leiden, The Netherlands |
dr. Svein O. Fredwall | senior medical consultant | TRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital, Nesodden, Norway |
Marco Sessa | patient representative | Achondroplasia foundation Italy |
dr. Maria Francesca Bedeschi | clinical geneticist | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy |