Children and Rare Diseases: Sharing Knowledge, Improving Care
For the 2025–2026 academic year, the Université Hospital of Brussels (H.U.B.) is organising a series of seminars 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 developments, and strengthening collaboration at both European and international levels.
Who is it for?
- Healthcare professionals (all disciplines)
- Patients, families and relatives
- Students, associations and the general public
Why take part?
- Review the latest scientific and therapeutic advances
- Understand the ethical, medical and societal challenges
- Discover the role of European Reference Networks (ERNs)
- Exchange with specialists and patient representatives
Organisation
When? First Tuesday of every month, 12:30–13:30
World Rare Disease Day: 27 February 2026, special afternoon session (13:00–17:00)
Where? Online via a web link – free participation, no registration required
Accreditation for healthcare professionals: Ethics & Economy accreditation requested for each session
Programme & Speakers
7 October 2025 — Béatrice Gulbis
Rare diseases and the child-to-adult transition: what role for the ERNs?
Focus on continuity of care and collaboration between specialised centres.
2 December 2025 — Alec Aeby
Rare childhood epilepsies (EPICARE network)
Typologies, diagnostic challenges and innovations enabled by European cooperation.
3 February 2026 — Catheline Vilain
Rare genetic disorders (ITHACA network)
Rapidly evolving diagnostic tools (genome sequencing, molecular analysis) and therapeutic perspectives.
27 February 2026 — World Rare Disease Day (13:00–17:00)
- Vinciane Vlieghe (Neonatology): early diagnosis from birth
- Viola Weeda (Paediatric Hepatology): rare liver diseases and new perspectives
- RDB (parents’ testimony): the daily reality of families
- Christine Fonteyne (Chronic Care): hospital and home-based management, global and personalised approach
7 April 2026 — Nicolas Deconinck
Rare neuromuscular diseases (EURO-NMD)
Innovative therapies (genetic and drug-based) and multidisciplinary follow-up.
2 June 2026 — Christine Devalck
Rare childhood cancers (PaedCan)
Specificities, complex diagnoses and progress made possible through shared protocols.
Practical Information & Accreditation
- Accès : le lien Visio est publié sur la page web
- Accréditation (Éthique & Économie) : une attestation par séance sera disponible.
- Questions & accréditation pour les soignants : maladiesrares [at] hubruxelles [dot] be (Envoyer un mail )