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: Integration EuRRECa and EuRR-Bone
Lead: prof S. Faisal Ahmed, pediatric endocrinologist, Glasgow University, Glasgow United Kingdom and coordinator EuRRECa
Members: dr. Natasha Appelman-Dijkstra, endocrinologist Leiden University Medical Center, Leiden the Netherlands, dr. Luca Sangiorgi, coordinator of ERN BOND
Working group: Fibrous Dysplasia/McCune Albright syndrome
Lead: dr. Natasha Appelman-Dijkstra, endocrinologist Leiden University Medical Center, Leiden the Netherlands
Members: prof. Roland Chapurlat, reumatologist INSERM Lyon, France, ms Martine Dekker (Dutch FD/MAS foundation), dr. Kassim Javaid reumatologist NDORMS Oxford United Kingdom, dr.Diana Ovarejo, endocrinologist Hospital del Mar, Barcelona Spain, dr. Danielle Tessaris, pediatric endocrinologist, Italy, Fibrous Dysplasia Support Society UK, Fibrous Dysplasia Spain
Working group: Osteogenesis Imperfecta
Lead: Prof. Wolfgang Högler (lead), paediatric endocrinologist, Johannes Kepler University Linz, Austria
Members: Prof Dr. Ralf Oheim, osteologist, Universitätsklinikum Hamburg-Eppendorf, ,Germany, Mrs. Rebecca Skarberg-Tvedt, patient representative, 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, Belgium, Prof. Dr. Carola Zillikens, endocrinologist, Erasmus Medical Center Rotterdam, The Netherlands.
Working group: Rare Hypophosphatemia
Lead: Prof. dr. Agnès Lighart, pediatric endocrinologist CHU Paris-Sud – Hôpital de Bicêtre, Paris France
Members: Prof. dr. Carola Zillikens, endocrinologist Erasmus MC, Rotterdam the Netherlands, Prof. dr. Maria Luisa Brandi, endocrinologist University of Florence, Medical School, Florence, Italy
Working group: Achondroplasia
Lead: prof. Klaus Mohnike pediatric endocrinologist, Otto-von-Guericke-University Magdeburg, Magdebrug Germany
Member: Genevieve Baujat, clinical geneticist Université Paris Descartes-Sorbonne Paris Cité, Hôpital Necker-Enfants malades, AP-HP, Paris, France. ms Ines Alves, patient representative ANDO Portugal.
