Rare Liver Diseases : expert centers

The FILFOIE Network groups together expertise related to all of the rare liver diseases in adults and children. Nationwide it unites 3 health networks of expertise centers :

Each of these networks is coordinated by a Reference Centre (CRMR) that have been accredited by the French Ministry of Health.

Biliary Atresia and Genetic Cholestasis (AVB-CG)


The Reference Center Biliary Atresia and Genetic Cholestasis (CRAVB-CG) is the coordination center for the Biliary Atresia and Genetic Cholestasis (AVB-CG) network. II is located within the Department of Paediatric Hepatology and Liver Transplantation of Bicêtre Hospital, which is part of the Public Assistance Hospitals of Paris (AP-HP).

The CRAVB-CG coordinates a national network of rare paediatric liver diseases care and surveillance. The network spreads throughout France and includes 2 Constitutive Reference Centres (CRMR), with complementary expertise on paediatric liver diseases, and 5 Competence Centres (CCMR), providing local patient care and follow-up.

The CRAVB-CG is organized around a multidisciplinary and highly specialized medical team with proven expertise in paediatric liver diseases, paediatric hepatology and liver transplantation, specific medical treatments and innovative therapies, together with related departments specialized in pediatric surgery, pediatric diagnostic and interventional radiology, digestive endoscopy, ERCP, pediatric intensive care and anesthesiology, anatomopathology, biochemistry, toxicology, virology and molecular biology. Department research activities cover mechanisms and treatment of paediatric liver diseases, bile secretion and cholestasis, genetic liver diseases, liver transplantation and innovative therapies.

  • Metabolic, Biliary Atresia & Related Diseases :
    Biliary atresia, Alpha-1-antitrypsin deficiency, Alagille syndrome, Neonatal sclerosing cholangitis, Bile acid synthesis defect, Progressive familial intrahepatic cholestasis and other genetic cholestasis, Wilson’s Disease, choledochal cyst and other biliary malformations.
  • Autoimmune Liver Diseases :
    Autoimmune hepatitis and Primary Sclerosing Cholangitis.
  • Structural Liver Diseases :
    Vascular liver diseases including portal cavernoma, porto-sinusoidal vascular disease, hemangiomas and Congenital portosystemic shunt.
    Cystic liver diseases.

Department of Paediatric Hepatology and Liver Transplantation
APHP Paris-Saclay
Hôpital Bicêtre
78, rue du Général Leclerc
94270 LE KREMLIN-BICÊTRE
France

Contact: Mrs Amaria REMIL / Mrs Axelle CABRIOLLE
Email: amaria.remil@aphp.fr / axelle.cabriolle@aphp.fr
Phone: 33 (0) 1 45 21 31 64 / 33 (0) 1 45 21 31 64

Pediatric Hepatology and Liver Transplant Department Physicians

  • Pr Emmanuel JACQUEMIN
    • Assistant: Mrs Clarissa DOL: 33(0) 1 45 21 31 69
  • Pr Emmanuel GONZALES
    • Assistant: Mrs Axelle CABRIOLLE: 33(0) 1 45 21 31 64
  • Dr Oanez ACKERMANN
    • Assistant: Mrs Clarissa DOL: 33(0) 1 45 21 31 69
  • Dr Dalila HABES
    • Assistant: Mrs Delphine PICARD: 33(0) 1 45 21 31 70
  • Dr Bogdan HERMEZIU
    • Assistant: Mrs Stéphanie HERNANDEZ: 33(0) 1 45 21 37 86
  • Dr Alice THÉBAUT
    • Assistant: Mrs Stéphanie HERNANDEZ: 33(0) 1 45 21 37 86
  • Dr Joseph COHEN
    • Assistant: Mrs Delphine PICARD: 33(0) 1 45 21 31 70
  • Dr Marion ALMES
    • Assistant: Mrs Stéphanie HERNANDEZ: 33(0) 1 45 21 37 86

Gastro-intestinal endoscopy:

  • Dr Oanez ACKERMANN
    • Assistant: Mrs Clarissa DOL: 33(0) 1 45 21 31 69
  • Dr Mathieu DUCHÉ
  • Dr Isabelle BOYTCHEV (Diagnostic and therapeutic ERCP)

Other medical department staff

  • Healthcare Manager: Ms Laetita CATRY, 33 (0) 1 45 21 37 87
  • Nurse Coordinator: Mrs Annie MASMONTEIL, 33 (0) 1 45 21 31 74
  • Clinical Studies Technician: Mrs Isabelle FRITEAU, 33 (0) 1 45 21 37 90
  • Clinical Project Manager: Mrs Amaria REMIL, 33 (0) 1 45 21 72 71
  • Hospital Secretary: Mrs Steffie LONGHI, 33 (0) 1 45 21 31 67
  • Psychologist: Mrs Alexandra FLOURIS, 33 (0) 1 45 21 20 28
  • Social Worker: Mrs Florence JUILLET-GACE, 33 (0) 1 45 21 32 06
  • Dieticians: Mrs Joëlle WENZ, Mrs Marie COTREL, 33 (0) 1 45 21 31 05
  • Educators: Mrs Rebecca GORDON, Mrs Marie MOREL
  • Teacher: Mrs Marie GRIALOU
  • Psychomotor therapist: Mrs Julia MALPHETTES, 33 (0) 1 45 21 31 47 or 38 51
  • Speech Therapist: Mrs Carole VARIN, 33 (0) 1 45 21 27 64

Vascular Liver Diseases in adults (MVF)


 

The Reference Center for Vascular Liver Diseases (CRMVF) is the coordination center for the Vascular Liver Diseases in adults (MVF) network. It is located within the Hepatology Department at the Beaujon Hospital, which is part of the Public Assistance Hospitals of Paris (AP-HP).

The CRMVF coordinates a national network for vascular liver diseases including 32 Competence Centers and 1 Constitutive Reference Centre, accredited by the French Ministry of Health in 2005.

The CRMVF, a patient-centered care network, aims at offering the best possible care for patients with vascular liver disease. The multidisciplinary team includes experts in vascular liver diseases: hepatology and liver transplantation, diagnostic and interventional radiology, endoscopy, hematology, biochemistry, intensive care-anesthesiology, liver and gastrointestinal surgery.

The goal is to offer expert care locally as much as possible. Only when necessary, (e.g. for technical procedures that cannot be performed otherwise), the patient is seen at CRMVF in Beaujon. This paradigm fosters the development of improved local management mostly through training and collaboration.

CRMVF’s two additional goals are first, to share best practices, nationally and internationally, in the patient care, and second, to foster and expand clinical and translational research.

Vascular liver diseases (VLD)
– Budd-Chiari syndrome (BCS)
– Non-cirrhotic acute and chronic portal vein thrombosis (PVT),
– Portal cavernoma or chronic non cirrhotic extrahepatic portal vein obstruction,
– Extrahepatic portal vein obstruction (ehpvo) in cirrhosis
– Veno occlusive disease (VOD),
– Sinusoidal obstruction syndrome (SOS)
– Idiopathic non-cirrhotic portal hypertension (INCPH),
– Porto sinusoidal vascular disease,
– Drug induced liver injury and vascular liver disease,
– Ischemic cholangiopathy,
– Congenital portosystemic shunts,
– Pregnancy and vascular liver diseases,
– Fontan related liver disease

Risk Factors for Vascular Liver Diseases
– Management and treatments for VLD:
– Percutaneous liver biopsy
– Transjugular liver biopsy
– Hepatic hemodynamic studies
– Direct transhepatic venography,
– Retrograde transjugular or transfemoral venography
– Anticoagulation therapy in patients at risk for gastrointestinal bleeding related to portal hypertension
– Percutaneous angioplasty and stenting
– Liver transplantation

Hepatology Department
Hôpital Beaujon AP-HP
100 Boulevard du Général Leclerc
92110 CLICHY

FRANCE

Contact: Marie Santin Triaud, nurse coordinator / Valerie de Bremand, assistant

Email: crmvf.foie.bjn@aphp.fr

Inflammatory Biliary Diseases and Autoimmune Hepatitis (MIVB-H)


The Reference Centre for Inflammatory Biliary Diseases and Autoimmune Hepatitis (CRMIVB-H) is the coordination center for the Inflammatory Biliary Diseases and Autoimmune Hepatitis (MIVB-H) network. It is located within the Hepatology Department at the Saint Antoine Hospital, which is part of the Public Assistance Hospitals of Paris (AP-HP).

Accredited by the French Ministry of Health since 2005, the CRMIVB-H is a highly specialised centre, with recognised expertise regarding rare inflammatory and autoimmune liver diseases care, research and training.

The CRMIVB-H hosts a multidisciplinary team with major expertise in rare hepatobiliary diseases, hepatology, liver transplantation and hepatobiliary surgery, hepatology intensive care, as well as related departments of anatomopathology, imaging, molecular genetics, immunology, interventional endoscopy, specialized biochemistry, epidemiology and statistical methodology.

The MIVB-H network groups 31 French healthcare Competence Centers in the care of rare inflammatory and autoimmune liver diseases of adults and children.

Primary biliary cholangitis (PBC)
• Primary sclerosing cholangitis (PSC)
• Autoimmune Hepatitis (AIH)
• Low phospholipid-associated cholelithiasis (LPAC)
• IgG4-related sclerosing cholangitis
• Intrahepatic cholestasis of pregnancy
• Benign recurrent intrahepatic cholestasis
• Caroli Disease
• Congenital hepatic fibrosis
• Multiple Biliary Hamartomas
• Choledochal cyst
• Dubin-Johnson Syndrome
• Rotor Syndrome

Hepatology Department
CHU Paris Est – Hôpital Saint-Antoine
184 rue du Faubourg Saint-Antoine
75012 PARIS
FRANCE

Email: cmr.mivb@aphp.fr
Phone: 33 (0)1 49 28 28 36
Fax: 33 (0)1 49 28 21 07

Medical department physicians
Dr Christophe Corpechot, Coordinator of the MIVB-H reference centre
E-mail: christophe.corpechot@aphp.fr – Secretariat: 33 (0) 1 49 28 28 36

Pr Olivier Chazouillères, Coordinator of the Filfoie Health Network
E-mail: olivier.chazouilleres@aphp.fr – Secretariat: 33 (0) 1 49 28 23 78

Dr Sara Lemoinne
E-mail: sara.lemoinne@aphp.fr – Secretariat: 33 (0) 1 49 28 29 23

Other medical department staff
Mrs Florence Gonthier-Dahan, CRMR secretary: 33 (0) 1 49 28 28 36

Dr Farid Gaouar, clinical research: 33 (0) 1 71 97 01 17

Mrs Karima Ben Belkacem, clinical research: 33 (0) 1 86 69 70 05