Professor Jean-Marie Jouannic is head of the foetal medicine department at Trousseau Hospital.

A pioneer in France in the technique of in utero repair of myelomeningocele (PRIUM programme) with the neurosurgery team at Necker Hospital, he and his team are responsible for the ante-natal management of vertebral and spinal cord malformations.

He initiated a research programme on a myelomeningocele model, with the aim of miniaturising techniques for repairing this malformation in utero. He is also involved in training students and healthcare professionals. He is also a regular speaker at national and international gynaecology-obstetrics conferences and seminars.

The CRMRC-Spin@ coordinating centre is located at the Hôpital Trousseau in Paris (APHP, Sorbonne University). It provides care for prenatal, childhood and adolescent patients suffering from rare spinal column pathologies.

It is a member of the Centres of Reference for Rare Diseases (CRMR), which are referral centres recognised for their expertise in the care of patients and their commitment to research and training. These centres have a regional, inter-regional, national or even international attraction, depending on the rarity of the disease, with the aim of ensuring equity in terms of access to diagnosis, treatment and overall patient care.

CRMRs may be single-site (with a single site known as the “coordinating site”) or multi-site (comprising a “coordinating site” and one or more “constituent sites”).

Professor Raphaël Vialle is head of the Children’s Orthopaedic and Reparative Surgery Department (CORE) at Trousseau Hospital.

Orthopaedic surgery treats diseases, trauma and deformities of the musculoskeletal system. The orthopaedic surgery department treats children from birth to assess malformations or diseases of the musculoskeletal system, establish a prognosis for mobility and offer appropriate treatment. Children are monitored throughout their growth, a key period in the development of their muscles and skeleton.

The child-adult transition is also a key period for these anomalies. Once growth is complete, transitional consultations with orthopaedic surgeons from Prof Hugues Pascal-Mousselard’s department at the Pitié-Salpêtrière hospital are organised to ensure continuity of care and optimum management of the young adult.

Prof Vialle and Prof Pascal-Mousselard are also involved in training students and healthcare professionals. They are regular speakers at national and international orthopaedic surgery conferences and seminars.

Professor Bertrand Fontaine is head of the Neuro-Myology Department at the Pitié Salpêtrière Hospital.

The neuromuscular pathologies examined in his department may be genetic in origin (dystrophies, congenital myopathies, metabolic myopathies, congenital myasthenic syndromes, neuropathies) or acquired (myasthenia, inflammatory, endocrine, toxic or iatrogenic myopathies, psychogenic disorders).

The department provides multidisciplinary consultations for adults, offering expert diagnosis of the disease and its complications, therapeutic management, genetic counselling and support for patients throughout the process.
Professor FONTAINE’s Adult Neuro-myology Department also cares for children and adolescents treated at Trousseau for neuro-muscular diseases as they move into adulthood.