Children and Rare Diseases: Sharing Knowledge, Improving Care
Seminar Series 2025–2026 at the University Hospital of Brussels (H.U.B.)”
Children and Rare Diseases: Sharing Knowledge, Improving Care
Seminar Series 2025–2026 at the University Hospital of Brussels (H.U.B.)
The University Hospital of Brussels is organising, for the 2025–2026 academic year, a seminar series dedicated to rare diseases. Open to all, these events bring together leading experts, patients and their families, with the aim of raising awareness, sharing the latest research advances, and strengthening collaboration at European and international level.
Organisation
- One seminar on the first Tuesday of each month, from 12:30 to 13:30
- A special afternoon session on 27 February 2026, to mark Rare Disease Day
- Online access via Teams, free participation, no registration required
- Ethics & Economics accreditation requested for each session
- Information and accreditation for healthcare professionals: maladiesrares [at] hubruxelles [dot] be (Envoyer un mail )
Programme & Speakers
7 October 2025 – Béatrice Gulbis: Rare diseases and the child-to-adult transition: the role of European Reference Networks
Professor and medical biologist Dr Béatrice Gulbis is a specialist in rare blood diseases. She is also co-coordinator of the European Reference Network EuroBloodNet, which brings together expertise in rare haematological conditions across Europe. Her lecture will explore the key challenges linked to the transition from childhood to adulthood in medical follow-up – a critical phase for many patients living with rare diseases. She will highlight the crucial role of European Reference Networks (ERNs) in supporting this transition, improving continuity of care, and strengthening collaboration between specialised centres.
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2 December 2025 – Alec Aeby: Rare epilepsies in children (EPICARE network)
Professor Alec Aeby is a paediatric neurologist and researcher, specialising in rare childhood epilepsies. He is involved in the European network EPICARE, which brings together centres of expertise in complex epilepsies. His presentation will cover the different forms of rare paediatric epilepsies, diagnostic challenges, and therapeutic advances made possible through European cooperation. The focus will be on the importance of early diagnosis and family support.
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3 February 2026 – Catheline Vilain: Rare genetic diseases in children (ITHACA network)
Dr Catheline Vilain is a clinical geneticist, specialising in rare genetic disorders and congenital anomalies. She is an active member of the European network ITHACA, which promotes research and coordinated care in genetic and developmental conditions. Her lecture will provide an overview of these diverse pathologies, the rapidly evolving diagnostic tools (genomic sequencing, molecular analyses), and the therapeutic perspectives that are progressively transforming the care of children and their families.
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27 February 2026 – Rare Disease Day: Special afternoon session (13:00 – 17:00)
- Vinciane Vlieghe – Neonatologist: on the challenges of rare diseases identified at birth, where early diagnosis and high-quality care can have a decisive impact.
- Viola Weeda – Paediatric hepatologist: on rare liver diseases in children, an area where advances in transplantation techniques and follow-up care are opening new perspectives.
- RDB (parent testimony) – A session of sharing and testimony, providing an essential insight into the daily reality of families facing diagnostic and therapeutic uncertainty.
- Christine Fonteyne – Expert in chronic care: on the management of patients with rare diseases, both in hospital and at home, highlighting the importance of comprehensive and personalised support.
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7 April 2026 – Nicolas Deconinck: Rare neuromuscular diseases in children (EURO-NMD network)
Dr Nicolas Deconinck is a paediatric neurologist engaged in research and care for paediatric neuromuscular diseases. He is active in the European network EURO-NMD, which brings together expertise in this field. His lecture will present scientific and therapeutic advances, particularly in innovative therapies (genetic and pharmacological), as well as the importance of multidisciplinary follow-up to improve the quality of life of affected children.
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2 June 2026 – Christine Devalck: Rare paediatric cancers (PaedCan network)
Dr Christine Devalck is a paediatric oncologist, specialising in rare childhood cancers. She is involved in the European network PaedCan, which aims to pool knowledge and therapeutic protocols. Her presentation will highlight the specific features of these cancers, their often complex diagnosis, and the progress made through international cooperation to provide young patients with adapted and innovative treatments.
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This seminar series offers a unique opportunity to engage with leading specialists, learn about the latest research advances, and collectively reflect on the societal, medical and ethical challenges posed by rare diseases.