Professor Vivi Heine is full professor of Human Model Systems at the Emma Children’s Hospital and board member of the Emma Center for Personalized Medicine (EmmaCPM) and Dutch Society for Human Genetics (NVHG). She studies the pathophysiology of developmental brain disorders by considering a glial component. For long research was focused on neurons, while glia dysfunction is increasing been shown to contribute to various neurological disorders. Her research centers around induced pluripotent stem cell (iPSC) technology and disease models from patients with genetic neurodevelopmental disorders, including Tuberous Sclerosis Complex (TSC), Rett syndrome, GRIN2B, Schizophrenia, and the brain white matter disorders 4H syndrome and Adrenoleukodystrophy (ALD). Her lab optimized procedures to generate human 2D or 3D iPSC-derived neuron-glia co-cultures and organoid models that are functionally characterized by advanced microscopy, electrophysiology, proteomics and/or high content cellular screening. She performed ground studies that identified how neuron-glia interactions contribute to brain network dysfunctions in these neurodevelopmental disorders.
Mirthe Klein Haneveld is a medical doctor, care ethicist, and epidemiologist in training. She currently works as a PhD candidate and genetic counsellor at Amsterdam University Medical Hospitals. Her research focuses on developing clinical practice guidelines for rare genetic conditions associated with intellectual disability. She aims to address the unique methodological challenges imposed by rare diseases, while strengthening partnerships with individuals and families living with these conditions. This work is part of the European Reference Network ITHACA, which supports rare malformation syndromes and neurodevelopmental disorders.
Dr. Lotte Haverman is a clinical pediatric psychologist by training and head of the research group PROMs & pediatric psychology at the Emma Children’s Hospital, Amsterdam UMC. She specializes in integrating Patient-Reported Outcome Measures (PROMs) into routine clinical care (pediatric and adult care) to enhance patient-centered approaches. Dr. Haverman led the development and implementation of the KLIK PROM portal, now utilized in over 40 Dutch hospitals, facilitating systematic monitoring of Patient Reported Outcomes. Her research emphasizes patient engagement. Additionally, she focuses on developing PROMs, studying psychometrics and creating core PROM sets for vulnerable individuals (e.g. communication disabilities or genetic intellectual disabilities), aiming to standardize patient-centered outcomes in rare diseases.
Peter van de Ven is a biostatistician and associate professor of clinical trial methodology at the University Medical Center Utrecht (UMCU) where he leads the Clinical Trial Methodology & Statistical Consultation team. His research focusses on innovations in clinical trial methodology that help make trials more efficient, such as applications of Bayesian methods in trials and adaptive trials. As a statistical consultant at UMCU and Amsterdam UMC, he advised on the design and statistical analysis for trials in several rare diseases and conditions, including trials for treating behavioral manifestations in Smith-Magenis syndrome, Fragile X Syndrome and Tuberous Sclerosis Complex. He was a member of the N-of-1 for all consortium that focused on N-of-1 trials in metabolic diseases. Besides being an associate professor at UMCU, he is a seconded methodology assessor for the Dutch Medicines Evaluation Board (CBG-MEB).
Marianne van den Bree is a Professor of Psychological Medicine within the Division of Psychological Medicine and Clinical Neurosciences and the Neuroscience and Mental Health Innovation Institute at Cardiff University. She has a background in psychology, human genetics, and epidemiology. She studied in the Netherlands (BSc and MSc) and USA (PhD). She leads the RarE GenetiC Variant ResearcH PrOgramme (ECHO; https://www.cardiff.ac.uk/centre-neuropsychiatric-genetics-genomics/research/themes/developmental-psychiatry/copy-number-variant-research-group) at Cardiff University. This longitudinal programme has recruited and assessed >3,000 children and young people with mutations linked to high risk of neurodevelopmental and psychiatric conditions as well as unaffected siblings and parents. It combines detailed and wide-ranging phenotyping throughout childhood, adolescence and adulthood with neuro-imaging, and genetic and pharmacological studies.
She also directs the LIfespaN multimorbidity research Collaborative (LINC; https://www.cardiff.ac.uk/lifespan-multimorbidity-research-collaborative/people), an international programme investigating the role of rare and common genetic factors in the development of physical and mental health multimorbidity across the lifespan in eight longitudinal population-based cohorts (aggregate n~7M).
She is furthermore a key investigator within a number of other national and international consortia, including IMAGINE-ID (https://imagine-id.org/) and Genes to Mental Health (G2MH; https://genes2mentalhealth.com/about/g2mh/) and a member of Advisory Panels such as the Cleft Collective cohort at Bristol University.
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The Society for the Study of Behavioural Phenotypes (SSBP) is an international, interdisciplinary research society for studying the development, learning and behaviours of individuals with genetic disorders and ways of helping to improve lives. The society is registered as a charity in the UK (No. 1013849) and was set up in 1987.
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