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: Integration EuRRECa and EuRR-Bone (Core and e-REC)

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 and mrs Gaby Doxiadis (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, Nerea Arrieta Urriategi (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.