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FIRENDO rare disease network: what for ?

To increase awareness of endocrine rare 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.

Main missions

The FIRENDO network has developed these general objectives following three main lines : 

  • Providing information about rare diseases, 
  • Improving the patient care pathway and 
  • Carrying out an epidemiological watch

What do you think of our website?

The website is celebrating its third year online ! We have already had thousands of individual visitors who have consulted our pages over 10 000 times. What do you think, how did we score ? Do you find the information on helpful? How could we improve it ?

Discover our interactive directory !

Search by facility or by the type of consultation you are looking for. Or simply discover the actors in the FIRENDO network close to where you live.

Our guide will enable you to :

  • Localize and learn more about your endocrine glands ;
  • Find out more about secreted hormones ;
  • Visualize all of the rare endocrine and gynaecological disorders covered by FIRENDO.

    Click on a pathology in the list and our glossary will tell you more about it, including the facilities which can care for it.

Go to digital content

Care pathway for a patient suffering from a rare disease

Who to contact? Where does my general practitioner fit in? Where can I get a healthcare and emergency card? The answers can be found in our digital content.

Living with a rare endocrine disease

Am I eligible for long-term illness cover, an ALD ? Someone mentioned a departmental home for the disabled, an MDPH... How can my occupational doctor help me on a day-to-day basis ? Where can I apply for home-based care ? Click here to learn more!

Consult our glossary

This is where you can understand all of the difficult words and terms: hormone, endocrinology or congenital adrenal hyperplasia, for example! Our glossary offers a wealth of information as well as useful links to inform you about your disease.