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ensemblecontrelatyrosinemie.fr

Patient association offering support and information to families of people with tyrosinemia, a rare hereditary metabolic disease, in France

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Highlights

  • New on EvolcAdded 2026-11-02

About ensemblecontrelatyrosinemie.fr

Ensemble contre la Tyrosinémie is an association founded on 9 February 2015 by Helene Charbonneau, whose daughter has tyrosinemia type 1. It works to connect parents and patients affected by tyrosinemia, a rare hereditary disease of the metabolism, and to share information about the disease and its daily constraints.

Its audience is patients with tyrosinemia, their parents and families. The association raises funds and makes the disease known through paediatricians and dieticians in hospitals and medical institutions, and it takes part in meetings and working days of the G2M metabolic diseases network.

The association was founded in 2015 and is run by its founder and chairwoman together with family members and friends. It cites the Robert Debré hospital in Paris and the Angers hospital among the medical institutions that first worked with it.

Product: Peer support, information about tyrosinemia and awareness actions for patients, families and medical institutions.

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Website technologies

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Backend

Content management

  • WordPressHigh confidence
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Forms

  • Contact Form 7High confidence
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Frontend frameworks

  • jQueryHigh confidence
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Hosting

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