Vertical Themes

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 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
Charlotte van BeuzekomProject manager EuRR-BoneLeiden University Medical Center,
Leiden, The Netherlands
Jillian BryceProject manager EuRRECaGlasgow University,
Glasgow, United Kingdom
Ana Luisa Priego ZuritaEuRR-Bone/EuRRECa fellowLeiden University Medical Center,
Leiden, The Netherlands

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 Tessarispediatric endocrinologistRegina Margherita Children’s Hospital,
Turin, Italy
Jamie Watsonpatient representativeFibrous Dysplasia Support Society UK
Nerea Arrieta Urriategi
Magdalena Caballero Campos
patient representativesFibrous Dysplasia Spain
Ana Luisa Priego ZuritaEuRR-Bone/EuRRECa fellowLeiden University Medical Center,
Leiden, The Netherlands
dr. Lothar Seefriedorthopedic surgeonUniversity Hospital at the Julius-Maximilians University, 
Würzburg, Germany

Vertical Theme 3: Osteogenesis Imperfecta

Lead:
prof. Wolfgang Högler
paediatric endocrinologistJohannes Kepler University,
Linz, Austria
prof. dr. Ralf OheimosteologistUniversitätsklinikum Hamburg-Eppendorf,
Hamburg, Germany
Rebecca Skarberg-Tvedtpatient representative and ePAG ERN BONDOIFE
Ingunn Westerheimpatient representativeOIFE
dr. Eva ÅströmpediatricianKarolinska Institutet,
Stockholm, Sweden
dr. Meena Balasubramanianclinical geneticistSheffield Childrens Hospital,
Sheffield, United Kingdom
dr. Hans-Georg ZmierczakrheumatologistUniversity Hospital Ghent,
Ghent, Belgium
prof. dr. Carola ZillikensendocrinologistErasmus Medical Center,
Rotterdam, The Netherlands
dr. Anton FrankenendocrinologistIsala Clinics,
Zwolle, The Netherlands,
Claudia Finispatient representativeOI foundation Germany
Taco van Welzenis patient representativeOI foundation the Netherlands
Dagmar Mekkingrepresentative and project manager Key4OICare4Brittle Bones

Vertical Theme 4: Rare Hypophosphatemia


Lead:
prof. dr. Agnès Lignart
pediatric endocrinologistCHU Paris-Sud – Hôpital de Bicêtre,
Paris, France
dr. Diana Alexandra Ertlpediatric endocrinologistCHU Paris-Sud – Hôpital de Bicêtre,
Paris, France and
Medical University of Vienna,
Vienna, Austria
prof. dr. Carola ZillikensendocrinologistErasmus Medical Center,
Rotterdam, The Netherlands
prof. dr. Maria Luisa BrandiendocrinologistFondazione 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 Raimannpediatric endocrinologistMedical University of Vienna,
Vienna, Austria
Oliver Gardiner patient representativeXLH Alliance
Ana Luisa Priego ZuritaEuRR-Bone/EuRRECa Leiden University Medical Center,
Leiden, The Netherlands
Tenna Toftpatient representative and ePAG ERN BONDXLH 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 Tiendapediatric orthopaedic surgeonCHU Necker Enfants Malades,
Paris, France
prof. Karine BriotrheumatologistCochin Hospital,
Paris, France
dr. Peter KamenickyendocrinologistBicêtre Paris-Sud Hospital,
Paris, France
dr. Ola Nilssonpediatric endocrinologistKarolinska Institute,
Stockholm, Sweden

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, Paris, France
Ines Alvespatient representative and ePAG ERN BOND ANDO Portugal
prof. dr. Geert Mortierclinical geneticistCenter for Human Genetics University Hospitals Leuven
Leuven, Belgium
dr. Carmen Vleggeert-LankampneurosurgeonLeiden University Medical Center,
Leiden, The Netherlands
dr. Svein O. Fredwall senior medical consultantTRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital,
Nesodden, Norway
Marco Sessa patient representative
Achondroplasia foundation Italy
dr. Maria Francesca Bedeschiclinical geneticistFondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy