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This two-day workshop, held from November 14-15, offers an in-depth exploration of current research and advances in genetic and perinatal aspects of neural tube defects (NTDs) and related conditions. Day 1 covers the latest insights into the genetics of NTDs, whole genome analysis, and perinatal bladder function evaluation, including post-surgical outcomes and collaborative discussions. Day…

The European SBoD (Spina Bifida and other Dysraphisms) working group, co-chaired by Professor Jean-Marie Jouannic, has published a new article detailing the essential elements of prenatal diagnosis of open dysraphisms. The aim of this work is to improve the accurate diagnosis of these malformations in order to better inform parents and offer them appropriate antenatal…

A multidisciplinary team visited the Fann Hospital in Dakar, Senegal from 3 to 12 April as part of a surgical mission initiated by the TEO-TOURAINE association with the support of the Lions Club (Tours-Doyen and Dakar Baobab). The aim was to provide free neurosurgical care to children with disabilities caused by spina bifida and/or hydrocephalus.…

On Wednesday 3 July, the Spin@ coordinating centre, in collaboration with the “Spina Bifida et Handicaps associés” patients’ association, organised the second “PRIUM” children’s day, i.e. the children who have taken part in the In Utero Myelomeningocele Repair Programme, which was set up at Trousseau in 2014. A day dedicated to young patients with myelomeningocele…

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.