Our actions in 2017

Discover all our actions carried out in 2017

RARE 2017 – The 5th meeting on rare disease

On 20th and 21th November 2017: Ensemble contre la Tyrosinémie was at RARE 2017. The RARE meetings are organized every 2 years. They are the French events to be in terms of partnership on rare diseases. This year the two-day colloquium took place at the Sciences and Industry Institute in Paris.

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Meal and dance night

This was a successful event in 2016, this is why we did it again on 15th October 2017. This year, 223 meals were ordered and served or delivered at home. It was a convivial night in a party atmosphere.

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Patients day in Paris

3 association’s members participated to the work meeting – Hereditary disease of metabolism center of Ile de France – Filiere G2M associations of patients, on 22th September 2017 at the Imagine Institute in Paris.

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Thematic day in Angers

On 9th June 2017, Ensemble contre la Tyrosinémie attended the first thematic day organized by the Equipe Relais Handicap Rares (ERHR) of the region Pays de Loire: rarity, complexity of handicap situations in daily life in Angers.

Programme Equipe Relais Handicaps Rares

Search engine optimization and the creation of the YouTube Channel

In March 2017, our association was indexed on the website of the Filiere G2M (group for metabolism diseases).

We also created our own channel on YouTube to upload hypo proteinic recipes videos.

We received the support of the Swisslife Foundation as well (thanks to the involvement of a mother, employed by this group, whose child suffers from Tyrosinemia).

La Grande Emission on TV Vendée

On 26th February 2017, on Rare Diseases International Day, the association recorded “La Grande Emission” on TV Vendee.

Accompany of a drama group

The drama group of Thouarsais-Bouildroux: “Les Amis du Théâtre” (“The Drama Friends”) called upon our association to run food stands during 5 performances (out of the 6 planned) the 28th and 29th January and from the 3rd to the 5th February 2017. All the benefices went to the association.

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In January 2017, Ensemble contre la Tyrosinémie is eligible to a tax reduction for donators and gives a CERFA.

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