Rare epilepsies

French national reference center for rare epilepsies (CRéER)

The Reference Center for Rare Epilepsies (CRéER) at Necker-Enfants Malades Hospital is the coordinating site of the national network of centers dedicated to the care of patients with rare epilepsies. CREER is made up of several constituent sites and skills in partnership with patient associations extending throughout the national territory (metropolitan France and DOM).

Our reference center has integrated the DéfiScience rare diseases health sector, which brings together resources and expertises in the field of brain development and intellectual disability rare diseases. Our Necker site is a founding and board member of the EpiCARE european network dedicated to rare and complex epilepsies (European Reference Network for Rares and Complex Epilepsies)

Medical
team

Contact us
 

Phone. +33 (0)1 44 38 15 36

> Send an email

In case of emergency

CRéER’s objective is to improve knowledge of rare epilepsies, their diagnoses, their causes, their social and societal impacts and to offer the best overall care including specific therapies, whether by using drugs, surgery or dietetics. We offer a translational clinical-research vision for all our areas of work in order to get back to the patient and his family with the appropriate and optimal care.

Particular importance is given to monitoring the cognitive development of patients, and neuropsychiatric disorders, the majority of rare epilepsies can be accompanied by cognitive, behavioral or psychological difficulties.

The transition to adulthood is another major focus of our network, our centers including pediatric and adult experts have the mission of preparing and improving this transition.

In order to achieve these objectives, our reference center aims to promote:

  • improving patient care by ensuring early diagnosis of the type of epilepsy or syndrome;
  • the proposal of different treatment modalities (medication, surgery, ketogenic diet, vagus nerve stimulator);
  • multidisciplinary follow-up of patients taking into account developmental problems, psychiatric disorders and behavior;
  • improving local care;
  • the transition from pediatrics to the adult sector;
  • the promotion of therapeutic trials and research around its themes at the national and international level;
  • training for doctors and paramedical professionals.
  • Rare neonatal and infantile syndromic epilepsies
  • Early childhood epileptic encephalopathy with burst suppression, Ohtahara
  • Childhood partial epilepsy with migrating seizures
  • West Syndrome
  • Dravet syndrome
  • Rare syndromic epilepsies in children
  • Doose Syndrome
  • Epileptic encephalopathy with continuous spike-waves from sleep EPOCS
  • Epilepsy with myoclonic absences
  • Lennox-Gastaut syndrome
  • Myoclonic epilepsies
  • Rare syndromic epilepsies in adults: TEA, Status epilepticus
  • Rare monogenic epilepsies
  • Benign familial neonatal seizures – KNCQ2 / 3 genes
  • Benign infantile seizures – SCN2A genes
  • Autosomal dominant nocturnal frontal epilepsy – CHRNA4 gene
  • Focal focal epilepsies
  • Rare epilepsies of chromosomal or genetic cause
En savoir +

Professor Rima Nabbout heads the epilepsies program, coordinates the CRéER sites and develops healthcare of excellence and research in order to carry out these missions for patients with rare epilepsies, in different areas of activity:

Pr Nabbout, Dr Chemaly, Dr Kaminska, Dr Coste Zeitoun, Dr Losito, Dr Bar
Dr Blauwblomme
Pr Boddaert and his pediatric radiology team
EEG, SEEG : Dr Kaminska, Dr Eisermann, Dr Soufflet, Dr Losito, Dr Coste Zeitoun
Mr. Teng
Mrs Breuillard
Dr Barcia
Pr Nabbout, Dr N Chemaly in collaboration with the Necker Clinical Investigation Center (CIC) (Pr Treluyer)
Pr Nabbout, Dr Blauwblomme, Dr Bar, Dr Kabashi in the Imagine team, Inserm UMR 1163 (Translational Research for Neurological Diseases)
  • Therapeutic pathway of the child with rare epilepsies and his parents
  • Therapeutic pathway for infants and adolescents and their families with Bourneville tuberous sclerosis

The national diagnostic and care protocols (PNDS) are good practice guidelines for rare diseases. The objective of a PNDS is to explain to concerned professionals the optimal diagnostic and therapeutic care and the care pathway of a patient suffering from a given rare disease.

As planned in the second national rare diseases plan 2011-2014, they are developed by the rare diseases reference and competence centers using a method proposed by the Haute Autorité de Santé (HAS).

The PNDS include a « summary for the attending physician » section

  • Dravet Syndrome (in preparation)
  • Bourneville Tuberous Sclerosis (in progress)
  • Continuous wave peak sleep syndrome (POCS) (in preparation)
  • Infant myoclonic epilepsy
  • Sturge Weber Syndrome – co-authored with the rare diseases health sector FIMARAD (in preparation)

IUD epileptology

2019

Epilepsy Research Update
Imagine Institute | 3.26.2019
Epilepsy affects more than 500,000 people in France and in half of the cases it begins in childhood. On the occasion of World Epilepsy Day, Imagine takes stock of progress in this pathology. Read more in French

2016

Cannabis and epilepsy, hope in small steps
Le Figaro.fr SANTE | 1.8.2016
A clinical trial will verify the effectiveness of a drug containing cannabidiol against very severe epilepsies.
Read more in French

2015

Epilepsies, a question of genes
Pourquoi Docteur | 10.7.2015
Genetic analysis is a promising avenue to better understand the different forms of epilepsy. More than 100 genes linked to the disease have already been discovered. Read more in French

Contact information

Necker-Enfants malades university hospital
> Department of pediatric neurology
149 rue de Sèvres
75743 PARIS Cedex 15

> Pediatric welcome booklet

 In Necker, the CRéER reference center in brief 

0
patients followed at least once a year*
0
medical consultations*
0
day hospitalizations*
0
patients in full hospitalization*
0
authorized therapeutic education programs*
0
patients trained in therapeutic education*
0
current research projects*
0
university teaching hours*

* data valid for 2018