ALDERWEIRELDT Romain

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. He is also a lecturer at the Brussels Studies Center(University of Liège), where he has taught the AI and Healthcare module since 2019.
His engagement in genomics began following the diagnosis of his son with a severe neonatal form of Marfan syndrome. This experience led him and his wife, Ludivine Verboogen, to co-found the 101 Genomes Foundation, a patient-led initiative pioneering genomic data altruism, dynamic consent, and AI-enabled research for rare diseases.
Romain is a member of VASCERN (European Reference Network for Rare Multisystemic Vascular Diseases) and contributes to the European 1+ Million Genomes and related ELSI working groups. He is a board member of the Belgian Marfan Association, a member of the Marfan Europe Network Research Working Group, a member of the Innovation Advisory Board of EP PerMed (European Partnership for Personalised Medicine), and a regular reviewer for the Orphanet Journal of Rare Diseases.
His current work focuses on empowering patients through genomic data altruism, advancing precision medicine for rare diseases, and developing trusted legal and ethical frameworks for the responsible use of health data and artificial intelligence in research and healthcare