Lena Lande Wekre
Lena Lande Wekre, MD, PhD is Chair of the Organizing Committee of OiOslo2017 and member of the Scientific Committee. Dr. Wekre is a Special Advisor in medicine at the Norwegian National Advisory Unit on Rare Disorders as well as a Senior Consultant at TRS National Resource Centre on Rare Disorders. She has been working in the field of rare disorders since 1999, especially with connective tissue disorders and skeletal dysplasias. As part of her PhD, she conducted a population-based study on adults with OI, which has formed the basis of follow-up routines for this group. Dr. Wekre is representing Norway in the EU initiated project on rare Disorders, RD-action.
Peter Stenvinkel (MD) became a specialist in nephrology in 1992 and has a doctoral degree in renal medicine from 2004 at Karolinska Institutet, Stockholm, Sweden. In 1997 he became an Associate Professor (Docent) at the same institute, where he has been working as a full professor since 2009. His work is divided between 70% research and administration and 30% clinical duties. He’s a senior lecturer at Karolinska University Hospital. He was serving as a Visting Associate Professor at University of California Davis, USA from 2000-2001 and a Visiting Professor in Perth Australia in November 2013
Dr. Bonewald is the Director of the Indiana Center for Musculoskeletal Health. She received her Ph.D. in Immunology/Microbiology from the Medical University of South Carolina, was promoted from Assistant to Full Professor at the Univ. of Texas Health Science Center and served as director of the Bone Biology Research Program and Vice Chancellor for Research at the University of Missouri-Kansas City. She is a Past-President of the ASBMR and ABRF. She has served as Chair of the Board of Scientific Councilors for the NIDCR and served on Council for NIAMS. She is best known for her work in the study of osteocyte biology and function.
Paul Coucke, PhD, is the supervisor of the Heritable Connective Tissue Disorders lab (HCTD) (ISO 15189) at the Center for Medical Genetics Ghent (CMGG) since 2001. He is also involved in the HCTD research where he leads the technology development program of the research group. Recently, he set up a zebrafish facility within the department. He is assistant professor at the Ghent University and author of over 190 peer-reviewed papers and trained over 20 Master students and 6 PhD students. A recent analysis on his publications in the citation report reveals > 3,800 citations, on the average 30 citations per publication and his h-index is 35 (ISI).
Ruud A Bank
Ruud Bank (1960) received his Ph.D. in 1993 at the Vrije Universiteit (Amsterdam) for his work on post-translational modifications and genetics of the isozymes of amylase and pepsinogen in humans. In 1993 he started as a postdoc at TNO Quality of Life (Leiden), where he investigated the role of the collagen network in connective tissue diseases (osteoarthritis, osteogenesis imperfecta, Bruck syndrome, osteoporosis, fibrosis). In 2009 he became full professor in the field of Matrix Biology and Tissue Repair at the University Medical Center Groningen. He co-founded in 2000 the Dutch Society for Matrix Biology.
Richa Garva is a postdoctoral associate in Karl Kadler’s laboratory. His lab in the Wellcome Trust Centre for Cell-Matrix Research at the University of Manchester aims to understand how cells synthesize and maintain connective tissues. They have shown that matrix synthesis occurs at the plasma membrane during embryonic development. However, how cells maintain the matrix during adult life is unknown. His group has recently shown that the circadian clock regulates the synthesis and removal of matrix on a daily basis to service the loading regimes of tissues. The implications for tissue ageing and disease will be the topic of her seminar at the Oslo 2017 meeting.
Cecilia Götherström is Associate Professor of Stem Cell Research at Karolinska Institutet and her research is in the field of perinatal regenerative medicine. She was one of the first in the world to isolate and characterize human fetal mesenchymal stem cells. Dr Götherström has developed fetal mesenchymal stem cells for prenatal and postnatal transplantation purposes and since then, the cells have indeed been used clinically to treat fetuses and children suffering from severe osteogenesis imperfecta with promising results. Dr Götherström is leading an international multicentre trial called BOOSTB4 to evaluate the clinical effect of mesenchymal stem cell transplantation in the treatment of severe osteogenesis imperfecta.
Professor Nick Bishop is an internationally recognised expert in the field of paediatric bone research with a particular focus on EM/early phase studies in osteogenesis imperfecta, steroid-induced or disease-associated osteoporosis and hypophosphatasia, as well as an interest in early life influences on later skeletal health. He is based at Sheffield Children’s Hospital, a member of the BOND Rare Bone Disease ERN, and the lead designated centre for the nationally-commissioned Highly Specialised Severe, Complex and Atypical Osteogenesis Imperfecta Service. He is an Associate Director of the AR-UK Experimental Arthritis Treatment Centre, leading the bone theme, President of the Academic Paediatric Association of Great Britain and Ireland and Director of the Clinical Research Facility at Sheffield Children’s Hospital.
Thomas Wirth, MD, PhD is currently Director of the Department of Orthopaedics at the Olgahospital in Stuttgart, one of the largest paediatric hospitals in Germany and is Professor of Orthopaedic Surgery at the Philipps University of Marburg. He is the Past President of the German Association of Paediatric Orthopaedics, Treasurer of EPOS (2012-2016) and was elected 2nd Vicepresident of EPOS in May this year. He is a member of the International Paediatric Orthopaedic Think Tank (IPOTT). In 2014, he was awarded the Golden Honorary Needle of the German Society of Orthopaedics and Orthopaedic Surgery (DGOOC) in recognition of his contribution to Paediatric Orthopaedics. He has an active research interest in the basic science of the growth plate, paediatric hip disorders, paediatric trauma and the use of arthroscopy in children’s orthopaedics. His main clinical work furthermore includes the treatment of children with skeletal dysplasias, osteogenesis imperfecta, spine disorders and benign and malignant bone tumours.
Lars Folkestad is currently finishing his post graduate specialist training to become an adult endocrinologist. He defended his phd thesis entitled Morbidity and Mortality in Patients with Osteogenesis Imperfecta in Denmark earlier this year at the University of Southern Denmark, Department of Clinical Research. Lars has been a member of the Bone and Calcium Metabolic Diseases Research Unit at the Endocrine Elite Research Centre – Department of Endocrinology and Metabolism, Odense University Hospital, since 2005.
Barbro Malmgren is a specialist in Paediatric Dentistry and has served as Senior Consultant with responsibility for the post-graduate training in Paediatric Dentistry at the Eastman Institute, Stockholm. In 1991 she joined the Swedish national multidisciplinary pediatric OI team, and in 2004 she was promoted Medical Doctor, PhD, by Karolinska Institutet. The name of her thesis is “Clinical, Histopathologic and Genetic Diagnosis in Osteogenesis Imperfecta and Dentinogenesis Imperfecta”. She has a current position as supervisor for PhD-students at the Karolinska Institutet.
Hollis (Holly) Chaney, MD earned her bachelor’s degree from the University of California at Riverside. She received her medical degree from the Medical College of Pennsylvania. Dr. Chaney completed both her internship and residency in Pediatrics at Kaiser Foundation Hospital in California. After her residency, she completed a Pediatric Pulmonary Medicine fellowship at Children’s Hospital of Pittsburgh. Dr. Chaney is an Assistant Professor in Pediatrics at The George Washington University School of Medicine and Health Sciences. Dr. Chaney is the Vice Chair of the Division of Pulmonary Medicine at Children’s National Health System. She is board certified in pediatric pulmonary. Dr. Chaney has been practicing in Children’s Division of Pulmonary Medicine for over 25 years. She is particularly interested in Cystic Fibrosis and skeletal dysplasia.
Nadja Fratzl-Zelman is Senior Research Associate at the Ludwig Boltzmann Institute of Osteology in Vienna Austria, where she has been working since November 1987. She holds a PhD in Biology from the University of Vienna (1986) with the specializations Plant Physiology, Organic Chemistry and Human Biology. Her research interests include bone cell biology, as well as bone material quality in genetic and metabolic bone diseases. Recently she has been working on characterizing bone matrix and mineral properties in classical and in new forms of Osteogenesis imperfecta. Since 2016, she is also member of the executive committee of the Austrian Bone and Mineral Society.
Dr. Lee is Professor and Chairman of the Department of Molecular and Human Genetics at Baylor College of Medicine. Dr. Lee has been recognized by election to the National Academy of Medicine, Fellow of the American Association for the Advancement of Science (AAAS), the Association of American Physicians (AAP), the American Society for Clinical Investigation (ASCI), and the Society of Pediatric Research (SPR). Recently, he has also been awarded the ASHG Curt Stern Award for Outstanding Scientific Achievement. Dr. Lee was an Investigator of the Howard Hughes Medical Institute prior to his appointment as Chair in 2014.
Dr. Niyibizi is an Associate Professor of Orthopaedics and Rehabilitation and Biochemistry and Molecular Biology at Penn State College of Medicine, Hershey PA. Dr. Niyibizi received his MSc. Degree in Biochemistry from Rutgers University and PhD in Biochemistry in the division of Experimental Medicine at McGill University in Montreal Canada under the direction of Dr. Michel Van Der Rest. After completing his Ph.D. studies, Dr. Niyibizi pursued postdoctoral fellowships at Harvard Medical School and University of Washington in Seattle where he continued his studies in Collagen Biochemistry and the pathologies that result from them under direction of Dr. David Eyre. After completing his postdoctoral studies he took a faculty position at the University of Pittsburgh and continued his studies on connective tissue biochemistry with a major focus on the application of stem cells and gene therapies for Osteogenesis Imperfecta using animal models. Dr. Niyibizi research continues to focus on bone and stem cell biology and their application in the treatment of musculoskeletal diseases that include osteogenesis imperfecta.
Francis H. Glorieux received his MD from the University of Louvain and his PhD from McGill University. It is there that he developed his interest in heritable pediatric bone diseases. He demonstrated the beneficial effects of bisphosphonate in severe forms of Osteogenesis Imperfecta. Programs based on the Montreal protocols are now used all over the world. He is Emeritus Director of Research at the Shriners Hospital and Emeritus Professor of Surgery, Pediatrics and Human Genetics at McGill. Since 2009, he has been the Chair of the Medical Advisory Council of the Osteogenesis Imperfecta Foundation (USA). He has published over 290 peer-reviewed papers, and co-edited 3 books.
Dr. François Fassier completed his medical school in Lyon, France and his orthopaedic residency in Grenoble and Paris. In 1982 he immigrated to Canada and became a member of the Ste Justine Hospital staff until 1993. He was then appointed at McGill University and became Chief of Orthopaedics at the Montreal Children’s Hospital. Director of Pediatric Orthopaedic Surgery at McGill University, he became Chief of Staff of the Shriners Hospital – Canada in 2001 until September 2010. Dr. Fassier introduced the Ilizarov method for bone lengthening in Canada and developed a telescopic implant for children with bone fragility (The Fassier-Duval rod for OI). With Dr F.Glorieux he created a Multidisciplinary Clinic for OI patients.
In 1993, Dr. Miguel Galbán, after completing a postgraduate course in orthopedics and traumatology at the Central University of Venezuela, entered the Orthopedic Children’s Hospital of Caracas, where he specialized in children’s orthopedics and later was part of the medical staff of that hospital, where he became Medical Director. After conducting a research fellowship in child orthopedics at Alfred I. DuPont Hospital he became a leader in Orthopedics for Children in Venezuela. He is a pioneer in the treatment and correction of both acquired and congenital deformities, rare bone dysplasias, osteogenesis imperfecta, congenital pseudoarthrosis, hypoplastic syndromes and metabolic syndromes with bone involvement. Since November 2014 he has served as president of “SLAOTI” and he currently works in Medellín, Colombia.
Darko Anticevic (MD, PhD) is Professor of Orthopeadic Surgery, University of Zagreb, School of Medicine and senior Consultant at Children’s Hospital, Paediatr. Orthop. Depart. Zagreb, Croatia. President of LOC of 29th Annual EPOS Congress, Zagreb, 2010. and EPOS president (2017/2018). The founding member of Croatian Society for Osteogenesis Imperfecta (1998). President of LOC of 11th International Conference on Osteogenesis Imperfecta in Dubrovnik, 2011. Member of Scientific Committee of 12th I. C. on Osteogenesis Imperfecta Wilmington, DE, USA 2014. 46 publications are indexed (CC, PubMed, Scopus WoS) are cited 134 times and H-index is 6. He is editor/co-editor of two books. He was invited faculty, speaker and/or moderator on more than 50 international Congresses and Courses.
Inger Holm, Professor, PT, PhD, MHA is working at the research unit, Division of Orthopaedic Surgery, at Oslo University hospital/ Medical Faculty, University of Oslo. Her research fields includes osteoarthritis, physical function, physical activity, motor development/competence in children, outcome measures and patient reported outcome measures (PROM).
Joan Marini, M.D., Ph.D., is Chief of the Bone and Extracellular Matrix Branch, NICHD. She leads the NICHD Osteogenesis Imperfecta research program, in which clinical and bench research are fully integrated. Her lab generated the Brtl mouse model for type IV OI and has played a leading role in the Consortium for OI mutations. In the last five years, her group has been a leader in the exciting new developments about recessive OI, which have revealed important novel findings on the role of collagen prolyl 3-hydroxylation in bone formation. Her clinical research focuses on children with osteogenesis imperfecta and treatment with bisphosphonates and growth hormone. Dr. Marini received her M.D and Ph.D. in the Medical Scientist Training Program at the Johns Hopkins University School of Medicine. She completed training in pediatrics at Johns Hopkins and Georgetown University Hospital. She did Clinical Genetics specialty training at the NIH InterInstitute Genetics Program. She has twice been awarded the NIH Director’s Award for her work on osteogenesis imperfecta.
He is Head of Department of Medical Genetics and Coordinator of Rare Disease Centre at Rizzoli Orthopaedic Institute, Bologna, and Contract professor of Clinical Genetics of Bologna University. He is responsible of 3 National Registers of Rare Diseases (Li-Fraumeni, MHE and OI), a Member of National Coordination Team for Clinical Genetics Department, a Coordinator of many Regional Lab for Bioinformatics and manages the National and Regional Hub and Spoke Network on Skeletal Dysplasia. Contributor of more than 50 articles, he’s an active Member of several international medical associations, serving on the Executive Committee of CTOS as President. He’s currently the clinical lead for the European Reference Network for rare bone diseases (BOND).
Vernon R. Sutton
Dr. Reid Sutton is Professor of Molecular & Human Genetics at Baylor College of Medicine in Houston, Texas. He is attending physician in the Skeletal Dysplasia Clinic at Texas Children’s Hospital where he provides care to children and adults with OI and other skeletal disorders. He is a member of the medical advisory council for the OIF was the Principal Investigator for the OIF Linked Clinical Research Centers, a five-year longitudinal study of OI. He is currently the PI for the Longitudinal Study of the Brittle Bone Diseases Consortium of the Rare Disease Clinical Research Network (BBDC-RDCRN) and the Administrative PI for the BBDC-RDCRN, an NIH-sponsored initiative to advance research in rare diseases.
Professor Sillence is a consultant Clinical Geneticist to the Genetic Bone Clinic at the Westmead hospital and an Emeritus Consultant to the Osteogenesis Imperfecta (OI) clinical service in the Sydney Children’s Hospital based at Westmead. He has served on the Board of OI Australia and the Professional Advisory committees of OI Australia and the OI Federation of Europe. Between 1975-1977 he undertook a population and genetic study of Osteogenesis Imperfecta in Victoria Australia. From this study, a new diagnostic and prognostic classification of OI was developed and this has become the foundation of the International Nomenclature of Osteogenesis Imperfecta syndromes.
Osteogenesis Imperfecta Foundation (OIF)
Tracy Hart is the CEO of the Osteogenesis Imperfecta Foundation, Inc. (OI Foundation). The Foundation was established in 1970 and is dedicated to helping people cope with the problems associated with OI. The Foundation’s mission is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support. Since 1970, the OI Foundation’s funding for research has doubled every five years, for a total investment of more than $ 6 million. Funding is available for postdoctoral fellowships to encourage new investigators to begin a career in OI research, and seed grants for preliminary research. All applications are reviewed by the Foundation’s Scientific Review Committee, which includes many preeminent OI researchers and clinicians. Funding also supports the OI Registry and the Linked Clinical Research Centers. See www.oif.org for more information.
Osteogenesis Imperfecta Federation Europe (OIFE)
Ingunn Westerheim is the President of Osteogenesis Imperfecta Federation Europe (OIFE). The umbrella organisation was established in 1993 and its members consists of national and sub-national organisation which in one way or another support people living with Osteogenesis Imperfecta (OI). Today the OIFE has 18 European members, being national organisations for OI. Five supporting members are aid organisations and research foundations. Seven associated non-European members are located in Australia, USA, Ecuador, Georgia, Mexico, Peru and Panama. OIFE’s mission is to represent their members on a European level, for instance through the umbrella EURORDIS as well as networking between researchers, clinicians, health care providers, organisations and people with OI worldwide. OIFE promotes research and does awareness work in addition to supporting the establishment of OI-organisations in more countries. See www.oife.org for more information.