Español: Petición para el reconocimiento del síndrome de Ehlers-Danlos.
Français: Pétition pour une reconnaissance du syndrome d' Ehlers-Danlos,

Petition for recognition of the Ehlers-Danlos Syndrome.

5 Association united :

Un cœur pour le SED  (Nord)
(A heart for the EDS )

Ensemble pour Manon  (Loiret)
(Together for Manon)

Vivre avec le SED (Metz)
(Living with EDS)

Génération SED (L'Herault)
(EDS’ Generation)

 

 

 

Petition for recognition of Ehlers-Danlos Syndrome

 

In July 2013, a struggle of each instant and your mobilization through a petition had prevented the closure of Professor Hamonet’s consultation in Paris.

For nineteen years, Professor Emeritus Claude Hamonet carries a huge weight on his shoulders: diagnose and treat patients with an unknown debilitating and disabling genetic connective disorder:     

 

The Ehlers-Danlos Syndrome (EDS)  

 

We are in 2015 and no solution has been perpetuated for support. Its consultation is threatened again, not to mention the lack of resources deployed to support this pathology that probably affects 500,000 people in France. The government and the institutions took hardly any of their promises leaving patients and their families more and more immersed in anguish, robbing them of any hope of one day being treated...

The current report in France is:

- 2-year wait for an appointment with a specialist because of the lack of doctors,

- Refusal of frequent supported by ALD as medical officers of Social Security Funds ignore this pathology,

- Private entire siblings of some access to care because of the too expensive costs.

- A common social exclusion and few resources granted by the MDPH ( structure support people with disabilities in France).

 

A petition has been launched to obtain recognition of our condition and accessibility supported so, thank you to CONFIRM SIGN and receiving an email by simply clicking.     To those who wish to become more involved, thank you to relay a maximum around you via your own network and you have relationships in the media.     This is the future of thousands of sick and especially of their children is at stake.

 

There is EMERGENCY!!!

 

 


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