Speakers

Romain Alderweireldt is a Belgian lawyer, lecturer, and rare disease advocate working at the intersection of law, genomics, artificial intelligence, and healthcare. He is Co-founder of the 101 Genomes Foundation and a Senior Associate at CMS Brussels, where he advises clients on EU competition law in the Technology, Media & Communications and Life Sciences sectors. […]

Alberto Cámara is pursuing a PhD on federated analysis and query of FAIR data at the Polytechnic University of Madrid under the supervision of Dr. Mark D. Wilkinson, first author of the FAIR principles paper. Alberto has a bachelor’s degree in biology, a master’s degree in computational biology, and has been part of the European […]

Erik de Vrieze, PhD, is Assistant Professor of Personalized Medicine for Otogenetic Disorders at Radboud University Medical Center in Nijmegen, the Netherlands. His research focuses on the development of precision genetic therapies for inherited hearing loss and related sensory disorders, with a particular emphasis on antisense oligonucleotide (ASO) therapeutics and inner-ear drug delivery. Trained as […]

Fabienne Dobbels is a full Professor at the Faculty of Medicine of KU Leuven and a senior researcher at the Academic Centre for Nursing and Midwifery. She serves as Program Director of the Master of Science in Nursing and Midwifery, is a member of the board of the Department of Public Health and Primary Care, […]

Pr Alain Fischer studied medicine, specializing in pediatrics and immunology at the Université de Paris. After completing a postdoctoral fellowship at University College London, he began independent research at an INSERM unit at Necker Hospital in Paris. From 2009 to 2016, he was the director of the Institute for Genetic Diseases (Imagine) at Necker University […]

Adj A/Prof Tudor Groza is the co-lead of AI and Data Science at the Maternal and Child Health Research Institute, KK Women’s and Children’s Hospital, Singapore, Principal Scientist at the Bioinformatics Institute, A*STAR, and Deputy CTO (Health System Integration) of the National Precision Medicine Program Singapore. His work spans various dimensions of the research – […]

Dr. Stephen F. Kingsmore is President/CEO of Rady Children’s Institute for Genomic Medicine where he leads a multi-disciplinary team of scientists, physicians and researchers who are pioneering the use of rapid Whole Genome Sequencing to enable precise diagnoses for critically-ill newborns. Among his achievements, Dr. Kingsmore holds the Guinness World Record for achieving the fastest […]

Dr. Gal Lazarus is an Assistant Professor of Psychology at the Hebrew University of Jerusalem, where he leads the Precision Assessment and Intervention Lab. His research focuses on intensive longitudinal assessment, digital phenotyping, and the development of personalized methods for understanding and improving functioning in neurodevelopmental and mental health conditions. He is also the founder […]

Consultant Clinical Geneticist at CHI @ Temple Street and CHI@ Our Lady’s Children’s Hospital Crumlin. Vice- Coordinator & co-ordinator elect of ERN ITHACA (European Reference Network) Professional bodies/committees President elect European Society of Human Genetics Chair Diagnostic scientific committee International Rare Disease Research consortium (IRDiRCs) Member of Union European Medical Specialists Member of Minority Advisory […]

Estelle Michael majored in science and law and is an industry policy leader who aims to positively impact people’s lives and to develop sustainable ecosystems that facilitate patient access to health care solutions. She previously worked at GSK and AstraZeneca, and now works for UCB. For over thirty years, Estelle has been collaborating with patient […]

Francesco Muntoni is a Professor of Paediatric Neurology and the Director of the Dubowitz Neuromuscular Centre, at the UCL Great Ormond Street Institute of Child Health and Great Ormond Street Hospital for Children, London, UK. In the Institute and the hospital, he led the Novel Therapies Programme of the Biomedical Research Centre and between 2008 […]

Dan O’Connor is Executive Director Regulation at the Association of the British Pharmaceutical Industry (ABPI). He is medically (Leicester) and PhD (Imperial) qualified, and on the specialist register for Pharmaceutical Medicine. He joined the ABPI from the Medicines and Healthcare products Regulatory Agency (MHRA) in 2023 where he was Deputy Director of the Innovation Accelerator […]

Dr. Marjon Pasmooij, is head of the Science Department at the Dutch Medicines Evaluation Board (MEB), Associate Professor Drug Regulatory Science at Utrecht University, and co-chair of the Regulatory Science Network Netherlands (RSNN) and EMA-HMA European Platform for Regulatory Science Research. Marjon studied Cell Biology in Wageningen, and did her PhD at the Dermatology Department […]

Chantal Pichon, a Full Professor at the University of Orléans (France), holds the Innovation Chair of Excellence at the Institut Universitaire de France (Paris) and is elected as member of the French Academia of Technologies. Since 2022 and 2026 respectively, she has been heading the Technological Research Accelerator dedicated to mRNA technologies of Inserm and […]

Throughout her career in the space industry, Jana has focused on the development of economically sustainable and profitable uses of space that benefit life on Earth.  She successfully established the foundational partnerships that are defining the emerging market sectors for healthcare and technology in the expanding space economy. In addition to a strong technical background, Jana […]

Sharon F. Terry is President and CEO of Genetic Alliance, where she leads a global coalition of disease advocacy organizations dedicated to transforming health through patient engagement, data stewardship, and collaborative research. Since the mid-1990s, she has been a key figure in promoting people-driven approaches that place individuals, families, and communities as active partners in […]

Anton Ussi (MSc) is chief executive officer at EATRIS ERIC, the ESFRI European infrastructure for translational medicine. In his current role since 2015, Ussi has a background in technology transfer, with previous history in mechanical engineering, automotive design, and small business administration. Ussi is also Principal Investigator of REMEDi4ALL, a multi-sector EU- and UK-funded initiative […]

Mariann Vegh is the founder and President of the ASNSD Research Association, a global rare disease research nonprofit created following the diagnosis of her son, Erik, with Asparagine Synthetase Deficiency (ASNSD), an ultra-rare neurometabolic disorder. Driven by the urgent need for a treatment, Mariann leads a parent-driven effort bringing together researchers, clinicians and patient families internationally to […]