Author: admin-spin-la

The new label for rare disease centres will be celebrated on Wednesday 29 May 2024.

World Spina Bifida Day was launched in 2011 by the International Spina Bifida and Hydrocephalus Federation. The day was launched to raise awareness and understanding of spina bifida and hydrocephalus, and how to prevent neural tube defects. The World Day is also a way of defending and promoting the rights of people affected by these…

The 17th International Rare Disease Day took place on Thursday 29 February 2024. This annual event is coordinated by EURORDIS and, in France, by the Rare Diseases Alliance, supported by the members of the Rare Diseases Platform ( Rare Diseases Info Services, the Rare Diseases Foundation, Orphanet, and the AFM-Telethon), the Rare Diseases Health Networks…

On 22 March 2024, Prof. J.M. Jouannic was invited to take part in a round table discussion with teams from Brazil, Belgium and India on fetal surgery for fetuses with myelomeningocele.

Following its first labellisation as a centre of reference, the CRMR SPIN@ organised the Spin@ launch day on Friday 17 November 2023 at the Sorbonne Université-Site les Cordeliers faculty of medicine in Paris. This day of exchanges brought together Spin@ teams from all over France and abroad in a warm and friendly atmosphere to strengthen…

What is spina bifida? Definition, prenatal diagnosis and treatment explained by Pr Jean-Marie Jouannic.

At the initiative of the Spin@ coordinating centre and in collaboration with the patient association ‘Spina Bifida and associated handicaps’, the first ‘PRIUM Day’ was held on 14 June 2023 at the Trousseau Hospital in Paris. The aim of this day, which we hope to make a permanent feature of, is to create and strengthen…

In-utero surgery for myelomeningocele in the foetal medicine service and reference centre for rare diseases of spinal and medullary malformations Dr Lucie Guilbaud, a doctor in the foetal medicine department at Trousseau Hospital, explains the two in-utero surgeries that can be offered to patients whose foetus has been diagnosed with a myelomeningocele-type malformation: open in-utero…

Antenatal diagnosis by the Fetal Medicine Service – Rare Disease Reference Centre for Vertebral and Medullary Malformations at Trousseau Hospital AP-HP. Professor Jean-Marie Jouannic, head of the foetal medicine department, presents the stages in the antenatal diagnosis carried out by his team as part of the activity of the Rare Disease Reference Centre for Vertebral…