Who are we ?

The rare disease network FIRENDO has a national vocation to group together the clinical centres with expertise in rare endocrine diseases and to enable exchanges between the different members of the diagnostic, research, education and associative sectors via collaborative thinking.

In 2018 the Network united more than 200 entities in total, their profiles are as follows :

Reference centres

Centres of competence

Diagnostic laboratories

Research teams

Patient organizations

In 2018, the FIRENDO network included 18 patient associations. They speak on behalf of the patients and their impetus brings the different actors mentioned above even closer together.

Among them we can find associations grouped around one rare disease but also associations for more frequent or chronic diseases, which have rare impacts on the endocrine system.

A majority of these member patient organizations belong to the collective Alliance Maladies Rare (Rare Disease Alliance). This is a loi 1901 association, which heads the 202 rare disease patient associations. Isolated patients and their families, who do not belong to any particular association, can connect and communicate thanks to the Alliance. It represents nearly 2 million patients and approximately 2 000 rare diseases.

To find contacts and regional representatives of patient associations for rare endocrine diseases : go to our interactive Directory, tick Patient Associations and click on Find.

Go to Interactive Directory

Learned societies

Medico-social sector

Other actors of the medico-social sector interact with FIRENDO to ensure better care for rare endocrine diseases :

The Caisse Nationale de Solidarité pour l’Autonomie (CNSA ) (French national solidarity fund for independance), an organisation which finances the 131 Maisons départementales des personnes handicapées (MDPH) (Departmental Homes for the Disabled).

They are local meeting places for all recognition of a disability, which may result from a rare endocrine disease. These homes for the disabled must remain closely linked to the centres of reference and expertise in order to adapt their care specifically to the rare disease.

The Équipes Relais Handicap Rare (ERHR) (Relay Teams for Rare Handicaps) are regional. These facilities were created recently in order to care for extremely complex handicaps. They also complete the activity of the Departmental Homes for the Disabled in relation to the multiple consequences of rare diseases.

Other partners

Finally, there would be no FIRENDO network, or any members, without the support from the Agences régionales de santé (ARS) (Regional health agencies) and the multiple departments of their Hospital Centres (administrative, financial, legal, computer technology) …