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).

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.

Rare Diseases Networks Genesis

Networks are developed according to the National Rare Diseases Plan initiated by the French Ministry of Health. The last 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 diseases networks. There are currently 23 networks.

23 Rare Diseases Networks

AnDDI-Rares

Rare Developmental abnormalities  - Rare intellectual disabilities

anddi-rares.org

BRAIN TEAM

Rare motor or cognitive disorders of central nervous system

brain-team.fr

Cardiogen

Hereditary cardiac disorders

filiere-cardiogen.fr

DefiScience

Rare developmental brain disorders and intellectual disabilities

defiscience.fr

FAI2R

Rare autoimmune and autoinflammatory disorders

fai2r.org

FAVA-Multi

Rare multi-systemic vascular diseases

favamulti.fr

FILFOIE

Childhood and adulthood rare liver diseases

filfoie.com

FILNEMUS

Neuromuscular disorders

filnemus.fr

FILSLAN

Amyotrophic lateral sclerosis

portail-sla.fr

FIMARAD

Rare dermatological diseases

fimarad.org

FIMATHO

Rare abdominal and thoracic diseases and malformations

fimatho.fr

FIRENDO

Rare endocrine diseases

firendo.fr

G2M

Hereditary metabolic diseases

filiere-g2m.fr

MaRIH

Rare immunohematological diseases

marih.fr

MCGRE

Rare constitutional diseases of the red blood cell and erythropoiesis

filiere-mcgre.fr

MHEMO

Constitutional haemorrhagic diseases

mhemo.fr

MUCO/CFTR

Cystic fibrosis and CFTR-related disorders

muco-cftr.fr

NeuroSphinx

Rare pelvic and medullary malformations with sphincteric and/or neurological complications

neurosphinx.fr

ORKID

Rare kidney diseases

filiereorkid.fr

OSCAR

Rare bone and cartilage diseases

filiere-oscar.fr

RESPIFIL

Rare respiratory diseases

respifil.fr

SENSGENE

Maladies rares sensorielles

sensgene.fr

TETE COU

Rare malformations of the head, neck and teeth

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