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Who are we ?

A national network with 6 reference centers to: 

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Guide and facilitate the care of patients throughout France

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Coordinate expertise on the territory

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Promote research


These missions have four main objectives:


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Guiding patients and health professionals

The national structure of SENSGENE allows us to guide patient and healthcare professionals and in particular:

  • To clarify and facilitate the care path of the patient
  • To facilitate the drafting and promote the use of recommendations of good practices such as the National Diagnostic and Care Protocols

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Developing effective clinical and molecular diagnostic strategies

Rare sensory diseases are very numerous and very heterogeneous in clinical and molecular terms. Sequencing technologies have evolved very rapidly, leading to a diagnostic revolution.

Implementing these new technologies and adapting diagnostic strategies is a priority for us.


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Facilitating access to medical and social care

Differences in the recognition of disability and the need for care from one region to another require better coordination at the national level. Thus, our objectives are:

Short term :

  • To facilitate the access to information for the patients and inform them about the privileged interlocutors

  • Better inform the patients about their care

Long term:

  • To harmonize the patient cares on the whole territory as well as the recognition of sensory handicaps

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Allow the setting up of new clinical trials and make their access possible to all the patients in the territory

Through databases and Rare Disease cohorts, the collection of clinical and genetic data and the establishment of specific patient groups will facilitate the initiation of new clinical trials and their access to all.

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