The constitutive pediatric site for non-vascular Ehlers-Danlos syndromes (SED NV), located at the Necker-Enfants malades hospital, was created at the end of 2017 to respond to a growing demand for diagnosis and care for this group of pathologies in pediatric setting. This constitutive site offers dedicated consultations in genetics, joint consultations in physical medicine – rehabilitation and genetics, consultations dedicated to the SED theme within the palliative medicine / pain unit and consultations available with dedicated correspondents for the possible treatment in other medical and surgical specialties, in particular in orthopedics, dermatology, pneumology and cardiology. It is associated with the adult constitutive site for the SED NV, located in Garches – Dr Karelle Bénistan – already existing before 2017.
These two constitutive sites were integrated into the constitutional bone diseases (MOC) CRMR, taking into account the similarities between the 2 groups of pathologies in terms of management and the specialties involved. They are affiliated with the OSCAR rare diseases healthcare network and with the BOND and ReCONNECT European reference networks (ERN)
Dr Caroline Michot
Phone. : +33 (0)1 87 89 20 99
Please come in consultation with:
- reports from specialists already consulted (in particular genetics, rheumatology and neurology),
- biological assessments already taken
- and skeletal x-rays.
- Classic Ehler-Danlos syndrome
- Classic-like Ehler-Danlos syndrome
- Cardiac-valve type Ehler-Danlos syndrome
- Hypermobile Ehler-Danlos syndrome
- Arthrochalatic type Ehler-Danlos syndrome
- Dermatosparaxis type Ehler-Danlos syndrome
- Kyphoscoliotic Ehler-Danlos syndrome
- Brittle cornea syndrome
- Spondylodysplastic type Ehler-Danlos syndrome
Caroline Michot, geneticist
Florence Guillou, physical medicine and rehabilitation doctor (MPR)
Emmanuelle Baroux, secretary
Declarations of interest
For the sake of transparency, prevention and management of conflicts of interest, all participants in the development of a PNDS (coordinator (s), writer (s), members of the working group) must complete a declaration of interest. Declarations of interests are analyzed and taken into account, in order to avoid conflicts of interest, in accordance with the HAS guide « Guide to declarations of interest and management of conflicts of interest ».
Jean Claude Bernard
Marie Christophe Boissier
Dominique Bremond Gignac
Emmanuelle Chaleat Valayer
Martine Cohen Solal
Murielle de la Dure Molla
Caroline de Percin
Christian Garreau de Loubresse
Jean Marc Naccache
Valerie Nivet Antoine
Susana Quijano Roy
- SEDCARE study (study title: Study of the impact of CERECARE compression garments in the treatment of Ehhlers-Danlos syndromes (SED)
- Hypermobile Ehlers-Danlos syndrome: combination of high throughput assays (« omics ») for molecular elucidation and pathophysiological understanding. Project funded by AFSED. Project carried out within the INSERM UMR_S1163 laboratory « Molecular and physiopathological bases of osteochondrodysplasias », directed by Pr Valérie Cormier-Daire.
The pediatric constitutive site for SED NV is based on a national network of competence centers spread over the whole of the national territory: 14 competence centers dedicated to MOCs and integrating the SED NV activity and 1 dedicated only to SED NV in Perpignan. This allows easy access to care and the most optimal use of everyone’s skills and resources.
What are non-vascular Ehlers-Danlos syndromes?
Rare à l’écoute | 07.13.2021
What are non-vascular Ehlers-Danlos syndromes? What are the main warning symptoms that can lead to this diagnosis? What are the differential diagnoses to be ruled out? How to establish the diagnosis? What are the first-line examinations that the attending physician can perform before referring patients to a reference centre? Dr Caroline Michot, geneticist, hospital practitioner at the Necker-Enfants malades hospital and coordinator of the recent National diagnostic and care protocols (PNDS) on non-vascular Ehlers-Danlos Syndromes under the aegis of the OSCAR network, answers your questions.
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Necker-Enfants malades university hospital
> Molecular genetics department
149 rue de Sèvres
75743 PARIS Cedex 15
In Necker, the reference center for non-vascular Ehlers-Danlos syndromes (SED NV) in brief …
* data valid for 2019