From: A standard set of outcome measures for the comprehensive assessment of osteogenesis imperfecta
Role | Name | Surname | Title | Location | Prof. background | Additional perspective | Emailadress | Institute |
---|---|---|---|---|---|---|---|---|
Lead Team | Anton FRANKEN | Franken | MD, PhD | Zwolle, the Netherlands | Endocrinologist | a.a.m.franken@isala.nl | Isala Hospital | |
Lead Team | Guus JANUS | Janus | MD, PhD | Zwolle, the Netherlands | Orthopaedic Surgeon | a.j.m.janus@isala.nl | Isala Hospital | |
Lead Team | Wouter NIJHUIS | Nijhuis | MD | Utrecht, the Netherlands | Orthopaedic Surgeon | W.H.Nijhuis-2@umcutrecht.nl | University Medical Center Utrecht | |
Lead Team | Ralph SAKKERS | Sakkers | MD, PhD | Utrecht, the Netherlands | Orthopaedic Surgeon | OIFE Medical Advisory Board Member | R.Sakkers@umcutrecht.nl | University Medical Center Utrecht |
Lead Team | Marjolein VERHOEF | Verhoef | MD, PhD | Utrecht, the Netherlands | Rehabilitation Physician | M.Verhoef-19@umcutrecht.nl | University Medical Center Utrecht | |
Lead Team (Project Mgt) | Dagmar MEKKING | Mekking | PhD | The Hague, the Netherlands | Project Manager | Director Care4BrittleBones Foundation, OI-community | dagmar.mekking@care4brittlebones.org | Care4BrittleBones Foundation |
Expert Team | Kara AYERS | Ayers | PhD | Cincinnati, USA | Psychologist | Vice-President OIF Board of Directors, OI-community | Kara.Ayers@cchmc.org | Cincinnati Children's Hospital Medical Center |
Expert Team | Chantal DAMAS | Damas | BSc | Montreal, Canada | Physiotherapist | Coordinator Center of Excellence | CDamas@shrinenet.org | Shriners Hospitals for Children, Montreal |
Expert Team | Lars FOLKESTAD | Folkestad | MD, PhD | Odense, Denmark | Endocrinologist | OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member | lfolkestad@health.sdu.dk | University of Southern Denmark |
Expert Team | Antonella FORLINO | Forlino | PhD | Pavia, Italy | Biochemistry, Genetics | OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member | antonella.forlino@unipv.it | University of Pavia |
Expert Team | Paolo FRASCHINI | Fraschini | MD | Milano, Italy | Rehabilitation Physician | paolofraschini@gmail.com | Rizzoli Institute Bologna Vele affliaties | |
Expert Team | Claire HILL | Hill | PhD, MCSP PGCE | Sheffield, UK | Physiotherapist | OIFE Medical Advisory Board Member | clairehill3216@gmail.com | Sheffields Children's NHS trust foundation |
Expert Team | Richard KRUSE | Kruse | DO, MBA | Delaware, USA | Orthopaedic Surgeon | Richard.Kruse@nemours.org | Nemours/Alfred Dupont Hospital for children | |
Expert Team | Lena LANDE WEKRE | Wekre | MD, PhD | Oslo, Norway | Rehabilitation Physician | OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member | LENALW@sunnaas.no | TRS National Resource Center for Rare Disorders, Sunnaas Rehabilitation Hospital |
Expert Team | Lieve MICHIELS | Michiels | PhD | Belgium | not applicable | Board member ZOI, Belgium OI Association, OI Community | dillen.michiels@skynet.be | ZOI (Flemish OI Association) |
Expert Team | Kathleen MONTPETIT | Montpetit | MScOT | Montreal, Canada | Occupational Therapist, retired | Advisor Care4BrittleBones Foundation | kathleenmontpetit@yahoo.ca | Care4BrittleBones Foundation |
Expert Team | Leonardo PANZERI | Panzeri | not applicable | Italy | not applicable | President Italian OI Association AS.IT.O.I., OI Community | leonardo.panzeri@asitoi.it | AS.IT.O.I. (Italian OI Association) |
Expert Team | Valerie PORQUET-BORDES | Bordes | MD, PhD | Toulouse, France | Pediatrician | Care4BrittleBones Foundation Advisory Board Member | porquet-bordes.v@chu-toulouse.fr | CHU de Toulouse |
Expert Team | Frank RAUCH | Rauch | MD, PhD | Montreal, Canada | Pediatrician | frank.rauch@mcgill.ca | Shriners Hospitals for Children, Montreal | |
Expert Team | Jean-Pierre SALLES | Salles | MD, PhD | Toulouse, France | Physiopathologist | salles.jp@chu-toulouse.fr | CHU de Toulouse | |
Expert Team | Oliver SEMLER | Semler | MD | Cologne, Germany | Pediatrician | OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member, OI-community | joerg.semler@uk-koeln.de | University of Cologne, Department of Paediatrics |
Expert Team | Jony SUN | Sun | MSW, Project Manager | Beijing, China | Social Worker | China-Dolls Center for Rare Disorders (CCRD), OI Community | 82,456,214@qq.com | China-Dolls Center for Rare Disorders(CCRD) |
Expert Team | Michael TO | To | MD, PhD | Hong Kong SAR and Shenzhen, China | Orthopaedic Surgeon | mikektto@hku.hk | The University of Hong Kong—Shenzhen Hospital | |
Expert Team | Laura TOSI | Tosi | MD | Washington, USA | Orthopaedic Surgeon | OIF Medical Adviory Board | LTOSI@childrensnational.org | Children’s National Hospital, Washington, DC |
Expert Team | Yangyang YAO | Yao | MD | Shandong Provincial Hospital, China | Orthopaedic Surgeon | 15,165,313,344@126.com | Shandong Provincial Hospital | |
Expert Team | Eric Hiu Kwong YEUNG | Yeung | MSc, BSc | Hong Kong SAR and Shenzhen, China | Physiotherapist | ericyhk@hku.hk | The University of Hong Kong—Shenzhen Hospital | |
Expert Team | Lidiia ZHYTNIK | Zhytnik | PhD | Tartu, Estonia | Genetics, Biomedicine | OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member, OI-community | Lidiia.zhytnik@ut.ee | Tartu University Hospital |
Expert Team | Maria Carola ZILLIKENS | Zillikens | Prof. MD, PhD, | Rotterdam, the Netherlands | Endocrinologist | m.c.zillikens@erasmusmc.nl | University Medical Center Erasmus Rotterdam |