Rare Disease Networks : what for ?

To increase awareness of rare endocrine diseases and the visibility of care, research and education facilities on a national level, the FIRENDO network strives to provide information on available resources and to stimulate synergy among its different actors.

They aim to reduce difficulties often experienced by patients suffering from rare endocrine diseases to obtain healthcare, such as:

  • Difficulty to obtain an initial diagnosis, sometimes even leading to misdiagnosis,
  • Difficulty or even stopped continuity of care due to a lack of knowledge about rare diseases,
  • Difficulties with illness identification and recognition leading to problems of reimbursement or recognition of rights (school integration, social support, medico-social care).

Networks are developed according to the Plan National Maladies Rares (French National Rare Disease Plan) set up by the French Ministry of Health. The latest of these plans led to a federation of the expert centres into networks. These networks, often based on an affected organ system, are called rare disease networks.

What are the advantages of uniting as a network ?

  • Visibility

    Gain in visibility for patients and their family, the general public, regulatory authorities and healthcare professionals

  • Care access

    Clarify national network coverage and thus make it easier for the patient to have access to specialized care.

     

     

  • Collaboration

    Encourage collaborative projects to multiply epidemiological data, gain better knowledge of the natural history of these diseases and their risk factors, contribute to the development of therapeutic trials...

  • Sharing knowledge

    Transmit knowledge on rare endocrine diseases to all of the various actors, the patients and their family.

  • Expertise

    Improve the diagnosis expertise and patient follow-up.

  • Animation

    Encourage exchanges between the clinical expert centres and set up joint animation.

Background

Le développement des filières s'inscrit dans le Plan National Maladies Rares mis en chantier par le Ministère de la Santé. Le dernier de ces plans a permis de progresser vers une fédération des centres experts en réseau. Souvent structurés autour d'un système d'organes atteints, ces réseaux sont dénommés filières maladies rares. Elles sont actuellement au nombre de 23.

Les 23 Filières de Santé Maladies Rares

AnDDI-Rares

Anomalies du développement - déficience intellectuelle de causes rares

anddi-rares.org

BRAIN TEAM

Maladies rares à expression motrice ou cognitive du système nerveux central

brain-team.fr

Cardiogen

Maladies cardiaques héréditaires

filiere-cardiogen.fr

DefiScience

Maladies rares du développement cérébral et déficience intellectuelle

defiscience.fr

FAI2R

Maladies auto-immunes et auto-inflammatoires systémiques rares

fai2r.org

FAVA-Multi

Maladies vasculaires rares avec atteinte multisystémique

favamulti.fr

FILFOIE

Maladies hépatiques rares de l'enfant et de l'adulte

filfoie.com

FILNEMUS

Maladies neuromusculaires

filnemus.fr

FILSLAN

Sclérose latérale amyotrophique

portail-sla.fr

FIMARAD

Maladies rares en dermatologie

fimarad.org

FIMATHO

Malformations abdomino-thoraciques

fimatho.fr

FIRENDO

Maladies rares endocriniennes

firendo.fr

G2M

Maladies héréditaires du métabolisme

filiere-g2m.fr

MaRIH

Maladies rares immuno-hématologiques

marih.fr

MCGRE

Maladies constitutionnelles rares du globule rouge et de l'érythropoïèse

filiere-mcgre.fr

MHEMO

Maladies hémorragiques constitutionnelles

mhemo.fr

MUCO/CFTR

Mucoviscidose et affections liées à une anomalie de CFTR

muco-cftr.fr

NeuroSphinx

Complications neurologiques et sphinctériennes des malformations pelviennes et médullaires rares

neurosphinx.fr

ORKID

Maladies rénales rares

filiereorkid.fr

OSCAR

Maladies rares de l'os et du cartilage

filiere-oscar.fr

RESPIFIL

Maladies respiratoires rares

respifil.fr

SENSGENE

Maladies rares sensorielles

sensgene.fr

TETE COU

Maladies rares de la tête, du cou et des dents

tete-cou.fr


1st Rare Disease Plan (2005-2008)

Cover First French National Rare Disease Plan 2005 2008

The first plan enabled the creation of national centres with highly specific expertise for one or for a limited group of rare diseases. These are known as reference centres. As well as providing healthcare, these centres also have missions such as research, epidemiology and training. Each reference centre is a highly specialized hospital department surrounded by its own network of counterpart hospital departments in other French cities. The latter offer patients a local service and are known as competence centres.

 Download the English version of the 1st French Rare Disease Plan here

2nd Rare Disease Plan (2011-2014)

Cover Second National French Plan rare disease France 2012 2016

One of the objectives of the Rare Disease Plan II is to encourage the union of facilities which care for rare diseases. This program can either revolve around a process shared by several diseases (e.g. intellectual development or deficiency) or focus on an affected organ system. This second option led to the creation of a national health network for rare endocrine diseases, called FIRENDO. In 2018, there were 23 health networks for rare diseases in France.

Download the English version of the 2nd French Rare Disease Plan here

3rd Rare Disease Plan (2018-2022)

Cover France French National Plan Rare Disease Third 2018 2022

The third national plan for rare diseases was launched in mid-July 2018, continuing from the previous two plans. The national Rare Disease Networks were given a pivotal role in undertaking the 11 streamlines of this plan.

Download the English version of the 3rd Rare Disease Plan here