We mainly have medical, genetic and psychological advisors in various countries.
Dr. Charlène Oduber (Aruba)Medical advisor
Doctor Charlène Oduber finished her doctorate on 12 January 2011 on Clinical aspects of vascular malformations deregulated growth. This included a clinical and genetic study of congenital vascular malformations combined with locally impaired growth of bone and soft tissue. This is a joint venture between Academic Medical Center in Amsterdam and the Academic Hospital Maastricht. She is also medical advisor to the Klippel-Trenaunay Foundation Netherlands SKTN. She has given national and international presentations on this subject and won various awards. She is also co-author of a chapter in the textbook Phlebology by Professor Neuman.
Dr. Christianne van Nieuwenhoven (Netherlands)Medical advisor
Dr. Christianne van Nieuwenhoven is head of the Hand Surgery section of the Plastic surgery department at the Erasmus Medical Center and Team leader of the Children ‘s Hands Team at the Erasmus MC – Sophia Children’s Hospital in Rotterdam (the Netherlands). After her training as a plastic surgeon she followed the Dutch Wrist and Hand Fellowship. After this fellowship, she followed several international fellowships at renowned centers; ao. the NSH, Sydney, Australia, and the TSRH, Dallas, USA. The focus was on congenital disorders of the upper extremity. After returning to the Netherlands in 2009, she started as a hand surgeon at Erasmus MC, and worked as one of the team members at the Children’s Hands Team. After several years, she became team leader of this team with rehabilitation doctors, hand therapists, plaster masters, and clinical geneticists with the aim of ensuring care for children with congenital and acquired disorders and guiding parents. As chair of the ICHOM working group for congenital disorders of the arm and hand, and as a member of the Congenital Hand Study Group, she contributes to the improvement of diagnostics and the registration of outcomes on a global level. Part of the congenital disorders of limbs are the vascular anomalies. Since 2015 she is closely connected to the multidisciplinary WEVAR team (Workgroup Vascular Abnormalities Rotterdam) with a consultation hour where vascular anomalies, related to the limbs, are jointly seen and discussed.
Dr. Maaike Vreeburg (Netherlands)Medical advisor
Maaike Vreeburg is clinical geneticist in the MUMC+ in Maastricht (Netherlands). She has worked since 2003 at the outpatient department of clinical genetics. In 2004 she started, with colleagues, a multidisciplinary outpatient clinic of clinical genetics and dermatology departments for patients with questions about genetic disorders of skin, nails, teeth, hair and blood vessels of the skin (called genodermatosen). In 2008 she completed her training in a clinical geneticist and has worked since then in this function in the MUMC. Since May 2015 she is head of the outpatient clinic clinical genetics.
Vreeburg knew in recent years she needed to combine her clinical interest in the field of the genodermatology with scientific research. This resulted in December 2014 in a promotion with a dissertation titled “The multidisciplinary team: a simple strategy Genodermatosis to solve complex cases”.
In addition to genodermatology, she takes care of children and adults with intellectual disabilities, neuro genetics and children’s neurogenetics as focus areas. Not only the individual patient care, but also innovation of care for people with rare disorders, through training or research, in national and international levels, have her warm interest.
Dr. Margaret Lee (USA)Medical advisor
Margaret Lee, MD, PhD is an Assistant Professor of Dermatology and Pediatrics at the Boston University School of Medicine. She earned her MD from BUSM in 1999 and a PhD in Pathology & Laboratory Medicine in 2005. She trained for a year in pediatrics at SUNY Downstate, followed by the BU-Tufts Combined Dermatology Residency Program and then a dual fellowship in Pediatric Dermatology and the Stuart & Jane Weitzman Family fellowship in Vascular Anomalies at Boston Children’s Hospital. She returned to BUSM to serve as Director of Pediatric Dermatology after several years at Boston Children’s. Her research focuses on psychosocial health (in medical students and providers as well as pediatric dermatology patients), atopic dermatitis and vascular anomalies, with a patient/family-centered approach. She and her colleagues at Boston Children’s Hospital first described Diffuse Capillary Malformation with Overgrowth (DCMO). Her superpower as a physician and patient advocate is that she herself has DCMO; it was purely serendipity that she was assigned the project that led to a better understanding of this subtype of vascular anomaly with overgrowth, but she feels lucky to be able to understand vascular anomalies from both a scientific and personal perspective. Dr. Lee recently founded the nonprofit Comfortable In Our Skin, a youth-oriented peer support and resource organization that promotes self-acceptance, diversity, creativity and a healthy identity within our skin and beyond.
Dr. Millan Patel (Canada)Medical advisor
Millan Patel is a clinical assistant professor in the Department of Medical Genetics at the University of British Columbia and works as a clinical geneticist at BC’s Children’s and Women’s Hospital in Vancouver, Canada. He has research experience in Drosophila, mouse and human genetics. He is a co-founder and Research Director for the Rare Disease Foundation and has a passion for promoting research as a way to improve care for families in the rare disease community. His current research interests revolve around finding the genetic causes for Adams-Oliver syndrome and CMTC.
Dr. Patrick Kemperman (Netherlands)Psychological advisor
Patrick Kemperman works as a dermatologist at the UMC (Academic Medical Centre) in Amsterdam, the Netherlands and the Waterlandziekenhuis in Purmerend, the Netherlands. He is a general dermatologist who focusses on psychodermatology and itching. He is driven by a strong desire to bridge the gap between the treatment of physical and psychosocial problems in people who suffer from a chronic skin condition. Furthermore, he exerts himself to have studies performed into the relatively new field of psychodermatology, to achieve the ultimate goal of getting more attention for the psychological factors of skin diseases in the future, resulting in the best possible treatment for the patient.
Dr. Peter de Laat (Netherlands)Medical advisor
Dr. Peter de Laat (1958) works at the Erasmus MC – Sophia Children’s Hospital as a general academic pediatrician since 1989. Until 2013 he was Head of the medium care unit for pediatrics. He is educational coordinator pediatrics and a member of the training group pediatrics for the general pediatrics part. Special focus is on: education and training; vascular malformations, spina bifida, oncology and infectious diseases. Ever since the start in 1994, he joined the multidisciplinary WEVAR team (Work group vascular malformations Rotterdam) together with pediatric dermatologist Suzanne Pasmans (previously Arnold Oranje until his retirement in 2013) and pediatric surgeon Hester Langeveld (previously Gerard Madern). The last 20 years more than 1500 children with vascular malformations have visited the multidisciplinary WEVAR clinic. All new patients are seen by the whole team at once: pediatrician, pediatric dermatologist and pediatric surgeon to set the right diagnosis and define the best treatment.
Peter de Laat’s focus in the WEVAR team is on the systemic treatment of vascular tumors in children (hemangiomas, kaposiform hemangioendotheliomas and kaposiform lymphangiomatosis).
Prof. Dr. Chantal van der Horst (Netherlands)Medical advisor
Since 1985 – the beginning of her training as a plastic surgeon – Prof. Dr. van der Horst has been interested in the analysis and treatment of vascular malformations and hemangiomas. She also has an interest in congenital anomalies in general. She has been a staff member at the AMC since 1989. In 1990 she organized (along with the work group “Congenital Vascular Abnormalities”) the ISSVA Congress (International Society for the Study of Vascular Anomalies) in Amsterdam. Since then, she has been very actively involved in the field of congenital vascular abnormalities internationally. Her doctoral thesis, entitled “Considerations on port-wine stains and Their treatment” speaks for itself.
Over the years she has collaborated with many others on research and published on congenital vascular anomalies. This collaboration consists of work with geneticists, dermatologists, other plastic surgeons, vascular surgeons, intervention radiologists and patient groups. Collaboration leads gradually to better understanding of the effects of congenital vascular anomaly for the patients as well as to further insights into the causes of vascular abnormalities. These developments are unfortunately slow.
Since 2000 Prof. Dr. van der Horst has been head of plastic surgery at the AMC and instructor of plastic surgeons who of course also gain knowledge and understanding of congenital vascular anomalies.
Prof. Dr. Maurice van Steensel (Singapore)Medical advisor
Maurice van Steensel (1969) studied medicine at the Catholic University of Nijmegen. During his studies and after graduation he worked as a researcher at the Department of Clinical Genetics performing molecular research. An interest in hereditary skin diseases had already seized him when the opportunity presented itself, so he shifted from genetics to dermatology and trained to become a dermatologist. Together with Prof. Peter Steijlen he ran the outpatient clinic for hereditary disorders in Nijmegen. In 2003 he moved into dermatology in Maastricht, where in 2005 he obtained his doctorate in the molecular genetics of inherited skin disorders. In 2006, Dr. Steensel concluded his dermatology training. He directs the research into hereditary skin diseases and the laboratory for experimental dermatology that he and Dr. Michel van Geel began in 2003. At Maastricht University Medical Center, there are now three well-attended clinics for hereditary skin diseases where people from all over the world attend.
Prof. Dr. Miikka Vikkula (Belgium)Medical advisor
Prof Miikka Vikkula MD PhD is Co-Director of the Human Genetics de Duve Institute Human Molecular Genetics (De Duve Institute, Université catholique de Louvain (UCL), Brussels, Belgium).
Prof Vikkula obtained his M.D. at the University of Helsinki in 1992 and his Ph.D. in moleculargenetics, in 1993. He was a Research Associate Harvard Medical School 1993-1997, during which time he became interested in vascular and lymphatic anomalies. With his wife, Prof Laurence Boon, Plastic Surgeon, Co-ordinator of theVascular Anomaly Center, Brussels, the couple discovered the gene for familial venousmalformation in 1996, and since then manyothers. They settled in Brussels in 1997, where Dr Vikkula developed his own laboratory. He obtained a “docentship PhD” in 2000, and was nominated Assistant Professor at the Faculty of Medicine in UCL. He is a member of the Directorate of the de Duve Institute since 2004 and a full professor of Human Genetics since 2013. He has received numerous honours and awards; most recently, the Inbev-Baillet Latour Clinical Prize in 2013. He is a Member of the Royal Belgian Academy of Medicine since 2012. Prof Vikkula is well known internationally as amajor contributor to the understanding of molecular basis of vascular anomalies and lymphedema with >150 peer-reviewed publications and numerous chapters in major bio-medical textbooks.
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CMTC-OVM is a worldwide non-profit patient organisation based in the Netherlands.