The FILFOIE Network has defined numerous actions that need to be set up in order to improve the patient care pathway, promote research, develop education, and to spread information more efficiently to healthcare professionals and the general public.
Implementing the French National Registry for Rare Diseases
Encourage and organise the collection of clinical data from all of the Network’s centres to obtain a minimum data set in the French National Registry for Rare Diseases (in French: Banque Nationale de Données Maladies Rares, BNDMR).
Encouraging the development and the use of good clinical practice standards and guidelines
Prioritise the production of National Protocols for Diagnosis and Care – provide information about them in order to standardise patient care for rare liver diseases nationwide.
Improve the transition from children to adult care
Draw up standard guidelines – formalise the contents of the transition file – develop tools for patient liaison and follow-up – draw up an index of rare liver diseases – train and appoint regional correspondents for children and adults.
Improving the patient’s medico-social care
Improve the comprehension of disabilities associated with rare liver diseases in children and adults – optimise the exchange of information between the health institutions and social organisations concerned – educate specialists about disability assessments and filling in medical certificates.
- Create a national directory of programs and tools for Therapeutic Patient Education (TPE)
- Create a specialised directory for genetics laboratories
- Implement a software to run multidisciplinary healthcare meetings
- Create links between private and hospital healthcare professionals
Coordinating research activities within the Network
Keep a watch on calls for tender and provide methodological support during the application process – stimulate collaborations and partnerships – encourage the development of shared research projects – Inform about scientific news…
Creating an online teaching library
Map out teaching activities related to rare liver diseases – identify the educational resources available – develop new teaching aids in partnership with the learned societies – make access to these resources easier via the Network’s website.
Organising occupational training for healthcare professionals
Train and appoint regional correspondents for children and adults who want to participate in the improvement of the child-to-adult care transition process.
Organising regional information days for patients
Provide information about topics of common interest – bring together partners from healthcare, patient organizations, social, medico-social and institutional sectors – create links with local partners.
Organising information days for healthcare professionals
Organise an annual medical day for healthcare professionals – gather all of the interested parties – discuss ongoing and future projects – provide information about rare liver diseases in adults and children.