Neurofibromatosis type 1

Neurofibromatosis type 1 (NF1), also known as Von Recklinghausen syndrome, is a rare genetic disease. It is characterised in particular by skin anomalies such as birthmarks known as café au lait spots. Symptoms linked to the development of tumours along the nerves (neurofibromas) can occur and develop over time. The brain, eyes, bones and kidneys can be affected, to a variable degree but sometimes seriously.  

This disease requires an early diagnosis, in early childhood, and must be monitored by a specialised multidisciplinary team. The Children’s Hospital has provided this follow-up for many years, in the form of regular and systematic consultations with a number of specialists. For the comfort of the children and their families these consultations are arranged on the same day and take place once a year, although sometimes more frequently depending on the age and particularities of the child. The monitoring begins before birth and continues through the growth years of childhood and into adulthood. As they reach adulthood a transition consultation can be arranged at the Erasmus Hospital. Patients can be prescribed innovative medicines, depending on their individual situation and in line with international recommendations. Our team works in close cooperation with other specialists and paramedical teams at the Children’s Hospital as well as with GPs and paediatricians, child therapists (physiotherapists, speech therapists, occupational therapists, psychologists, etc.), support services, respite care services, associations and psycho-medico-social centres.   

Children's patients (Children's Hospital)

The multidisciplinary consultation is organised by the Neuroaediatrics Department (Co-ordinating doctor: Dr Anne Monier; Co-ordinating secretary: Ms Daniela Wayllace).

• Co-ordinating doctor and neuropaediatrician: Dr Anne Monier
• Dermatologist: Dr Pamela El Nemnom
• Ophthalmologist: Dr Sophie Lhoir
• Orthopaedist: Dr Jean-Paul Kaleeta
• Nephrologist: Dr Khalid Ismaili
• Geneticist: Dr Catheline Vilain
• Secretary coordinator: Mrs Daniela Wayllace (02 477 39 67)

Adult patients (Erasmus Hospital)

The consultation is organised by the Neurology Department (Cons [dot] Neuro [dot] erasme [at] hubruxelles [dot] be)

• Neurologist: Dr Chantal Depondt
• Neurologist: Dr. Gauthier Remiche
• Neurologist: Dr Michela Bisciglia