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 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