Ensemble contre la Tyrosinémie : our story


Founded on 9th February 2015, Ensemble contre la TyrosinémIe is born thanks to the strong will of Helene, mother of a daughter affected by the Tyrosinemia type 1. She wanted to find other parents, to exchange on the disease and its constraints and to not be alone to face up to this rare disease anymore.

Thanks to her energy and the help of her 2 oldest daughters, her partner, relatives and friends she created the Ensemble contre la Tyrosinémie association to support parents in distress, tell them that they are not alone to fight anymore, not alone to face up with the Tyrosinemia disease…

Thanks to her experience, Helene wants to help patients and their families…

The association decided to act in order to raise funds and make itself known by the families through paediatricians and dieticians from national hospitals and medical institutions.

We quickly made and print flyers and posters and sent them to the laboratory which gives the medicine to the patients.

In the Robert DEBRE hospital (Paris), Dr Manuel SCHIFF and the dietician Mr François LAURENT, were the first to be part of the adventure and to trust our association. Dr Magali BARTH from the Angers Hospital greeted our association with enthusiasm.

Referenced in the Filiere G2M (a group for metabolism diseases), since our creation we have often participated to meetings and days of work and increased our presence and interventions.

Little by little, Ensemble contre la Tyrosinémie becomes a serious actor in the eyes of the medical institutions.