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 the links between healthcare professionals and the two national patient associations: Spina Bifida and Associated Handicaps (Spina Bifida et Handicaps associés (ASBH)) and Scoliosis and Sharing (Scoliose et Partage).
A big thank you to all the participants, whose presence made the day a success, and to the organising team, whose commitment contributed to the success of this wonderful event.
Testimonials
‘It’s important for me to be here today to inaugurate the creation of this centre, which has been eagerly awaited by patients. It will enable us to be in closer contact with the medical teams specialising in the treatment of Spina Bifida and to discuss with them the problems that more specifically affect people with this malformation, from urological disorders to neurology and DYS problems’.
Yannick Henry, patient and representative of the Spina Bifida and associated Handicaps (Spina Bifida et Handicaps associés (ASBH)).
‘My midwife colleagues and I from the foetal medicine department and the Trousseau maternity unit were involved in caring for the first babies with the malformation to be operated on in utero, ten years ago. So we are very proud of this label. A day like this is very important for strengthening the links between healthcare teams and patients, and for hearing patients‘ accounts of their day-to-day experiences’.
Anne-Marie Darras, midwife coordinator of the Multidisciplinary Centre for Prenatal Diagnosis in the foetal medicine service at the Hôpital Armand-Trousseau AP-HP.