SED English

French national reference center for constitutional bone diseases (MOC): non-vascular Ehlers-Danlos syndromes (SED NV)

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)

Medical
team

Dr Caroline Michot
MD

Contact us
 

Phone. : +33 (0)1 87 89 20 99

> Send an email

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
  • Kyphoscoliotic Ehler-Danlos syndrome
  • Brittle cornea syndrome
  • Spondylodysplastic-type Ehler-Danlos syndrome
  • Musculocontractural type Ehler-Danlos syndrome
  • Myopathic type Ehler-Danlos syndrome
  • Periodontal type Ehler-Danlos syndrome
En savoir +

En savoir +

SED non vasculaire : diagnostic clinique d'une hyperlaxité articulaire
SED non vasculaire : kinésithérapie
SED non vasculaire : ergothérapie

Caroline Michot, geneticist

Florence Guillou, physical medicine and rehabilitation doctor (MPR)

Emmanuelle Baroux, secretary

Non-vascular Ehlers-Danlos syndromes:

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 ».

Salma Adham

Alexandra Benachi

Karelle Benistan

Jean Claude Bernard

Boris Bienvenu

Marie Christophe Boissier

Damien Bonnet

Dominique Bremond Gignac

Emmanuelle Chaleat Valayer

Benoit Coffin

Martine Cohen Solal

Murielle de la Dure Molla

Caroline de Percin

Xavier Deffieux

Bertrand Dussol

Michel Enjalbert

Michael Fanck

Christian Garreau de Loubresse

Anne Gompel

Christine Guillet

Albert Hagege

Annie Harroche

Roland Jaussaud

Hervé Lefevre

Jeremie Lefevre

Michel Lemoine

Quentin Lisan

Valeria Martinez

Frederic Mercier

Caroline Michot

Silvia Morar

Jean Marc Naccache

Valerie Nivet Antoine

Geoffroy Nourissat

Christophe Orssaud

Yann Parc

Susana Quijano Roy

Annie Rosa

Elise Schaeffer

Denis Tiberghien

Pierre Trouiller

Clinical research

  • SEDCARE study (study title: Study of the impact of CERECARE compression garments in the treatment of Ehhlers-Danlos syndromes (SED)

Fundamental research

  • 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.
> Listen to the podcast

Ehlers-Danlos diseases: « These syndromes affect the structure of the body »
Le Parisien | 06.11.2019

A meeting will be held this wednesday at the Ministry of Health to discuss better care for patients with Ehlers-Danlos syndrome. Caroline Michot, geneticist at the Parisian Necker hospital, explains what this evolving genetic pathology is.
> Read more

Contact information

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 …

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patients followed at least once a year*
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medical consultations*
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day hospitalizations*
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fully hospitalized patients*
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current research projects*
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university course*
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* data valid for 2019