Rare diseases: transition from adolescence to adulthood

The Rare Diseases Function of Brussels University Hospital (H.U.B) and ULB is organising, during the 2026–2027 academic year, a lecture series devoted to the transition of adolescents and young adults living with a rare disease.

Through different care pathways, the series will address the transition from paediatrics to adult medicine: continuity of care, coordination between teams, the young person’s progressive autonomy, changes in the parents’ role, and the impact of the disease on daily life and plans for the future.

The lectures are open to healthcare professionals, patients and relatives, associations, students, researchers, teachers and anyone interested in rare diseases.

maladiesrares [at] hubruxelles [dot] be (Send an email  )

Practical information

When? From 12:30 to 13:30, one Monday every two months, from September 2026 to May 2027.

Where? Online via Microsoft Teams.

Participation? Free of charge, upon registration. The Teams link will be sent to registered participants before each lecture.

Accreditation? An application for accreditation in ethics and economics is submitted for each regular lecture.

→ Register free of charge for the 2026–2027 lecture series

2026–2027 Programme

21 September 2026

Transition to adulthood in rare diseases: changes in care and challenges of autonomy in rare metabolic diseases

Prof. Béatrice Gulbis & Aurélie Empain

Béatrice Gulbis will present structural changes in the care of rare diseases in Belgium. Aurélie Empain will discuss, based on rare metabolic diseases, the gradual preparation for autonomy from paediatrics onwards and the practical challenges of transition when adult care pathways have yet to be established.

12:30–13:30 | Online via Microsoft Teams

→ Join the lecture

16 November 2026

Rare kidney diseases: from paediatric follow-up to adult transplantation

Prof. Khalid Ismaili & Prof. Alain Le Moine

This lecture will follow the pathway of young people living with a rare kidney disease, from paediatric follow-up to adult care. It will address preparation for transition, treatment adherence, transplantation when necessary, and coordination between teams. Particular attention will be paid to the young person’s progressive autonomy and the practical challenges of daily life.

12:30–13:30 | Online via Microsoft Teams

18 January 2027

Cleft lip and palate and craniofacial anomalies: adolescence, self-image and adult life

Dr Diane Franck & Dr Perrine Ledent

Beyond the surgical procedure, cleft lip and palate and craniofacial anomalies form part of a long-term care pathway. This session will address the different stages of care and the issues specific to adolescence: body image, speech, eating and social relationships. It will also examine the changing role of young people in decisions concerning their body, follow-up and transition to adult life.

12:30–13:30 | Online via Microsoft Teams

26 February 2027

World Rare Disease Day – Adolescents and young adults: Tips & Tricks for everyday life with a rare disease

AYA patient testimony panel

To mark World Rare Disease Day, this panel will give adolescents and young adults living with a rare disease the opportunity to speak directly.

Based on their experiences, the discussions will address schooling and studies, leisure activities, fatigue, social relationships, treatments, medical appointments and autonomy.

The aim is to share practical strategies, advice and resources to make daily life with the disease easier and gradually prepare for the transition to adulthood.

Practical information and the connection link will be communicated at a later date.

15 March 2027

Rare digestive, liver and abdominal diseases: autonomy, follow-up and coordination

Dr Helena Reusens & Prof. Arnaud Lemmers

This session will bring together paediatric and adult perspectives on rare digestive, liver and abdominal care pathways requiring coordinated follow-up. It will address surgical or interventional procedures and their consequences for eating, pain, fatigue and social life.

The lecture will also focus on the transition to adult follow-up, during which understanding of treatment, anticipation and autonomy gradually become central.

12:30–13:30 | Online via Microsoft Teams

17 May 2027

Rare cancers in adolescence and young adulthood: uncertainty, innovation and continuity

Prof. Youri Sokolow & Dr Félix Shumelinsky

This lecture will address rare cancers in adolescents and young adults, particularly sarcomas, from the perspectives of diagnosis, specialised expertise and therapeutic innovation.

It will also explore the impact of treatments on life plans, fertility, studies and relationships, as well as the continuity required between paediatric and adult oncology, surgery, research, rehabilitation and psychosocial support.

12:30–13:30 | Online via Microsoft Teams