What is Filfoie ?
The creation of the French Rare Diseases Networks
The first French National Plan for Rare Diseases (2004-2007) enabled the labelling of 131 reference centres, hospital structures with expertise for a disease or a specific group of diseases that are a resort for physicians and patients. Their actions are backed by competence centres which are structures enabling appropriate local healthcare.
Within the second French National Plan for Rare Diseases (2011-2016), French Rare Diseases Networks (FRDN) were created in order to coordinate actions and bring together all professional and associative partners involved, into broad and coherent care groups for rare diseases: specialist consultation centres, laboratories for diagnosis and research, patient organizations, learned societies….
The French Rare Diseases Network’s objective is dual:
to help guide patients and healthcare professionals through a multidisciplinary patient care pathway and thus reduce delays in diagnosis and treatment
to encourage exchanges, implement synergy and create a link between the actions of partners in healthcare, medico-social sectors, research and patient organizations.
23 Networks were thus created and labelled by the French Solidarity and Health Ministry in July 2014, including the FILFOIE Rare Diseases Network.
FILFOIE Network: who are we?
The FILFOIE Network groups together expertise related to all of the rare liver diseases in adults and children. Nationwide it unites:
Biliary Atresia and Benetic Cholestasis (AVB-CG)
- 1 coordinating rare diseases reference centre (Bicêtre Hospital – Le Kremlin Bicêtre)
- 2 constitutive rare diseases reference centres (Necker Children’s Hospital and Lyon Civil Hospices)
- 6 rare diseases competence centres (4 children, 2 adults)
Vascular Liver Diseases in adults (MVF)
- 1 coordinating rare diseases reference centre (Beaujon Hospital– Clichy)
- 1 constitutive rare diseases reference centre (Bicêtre Hospital – Le Kremlin Bicêtre )
- 32 rare diseases competence centres
Inflammatory Biliary Diseases and Autoimmune Hepatitis (MIVB-H)
- 1 coordinating rare diseases reference centre (Saint Antoine Hospital – Paris)
- 3 constitutive rare diseases reference centres (Paul Brousse/Bicêtre Hospital, CHRU Lille and CHRU Grenoble)
- 31 rare diseases competence centres
- UMR-S938 “Metabolic, biliary and fibro-inflammatory pathologies of the liver”
- UMR 1174 “Cell interactions and liver pathophysiology”
- UMR 1149 “Research centre for inflammation Paris-Montmartre”
- Unité INSERM U970 “Endothelial pathophysiology and biomarkers of vascular diseases”
- UMR INSERM U1193 “Pathophysiology occurrence and treatment of liver diseases”
Our missions
The Network’s objective is to set up actions aiming to:
Improve global patient care
- Encourage the development of good clinical practice guidelines
- Improve the child-to-adult transition in the patient care pathway
- Ensure national epidemiological data collection
- Improve the medico-social accompaniment for patients…
Coordinate clinical and pre-clinical research activities
- Encourage the development of shared research projects
- Encourage new collaborations and partnerships
- Support responses to calls for tender
Reinforce education and training
- Create teaching aids
- Organise occupational training for healthcare professionals and patients
Spread information to healthcare professionals and the general public
- Maintain a dedicated website (www.filfoie.com)
- Organise information days
- Participate in rare diseases events