Media Invitation - Patients With Ehlers-Danlos Syndrome Ask the Minister to Take Action

MONTRÉAL, March 14, 2017 /CNW Telbec/ - Patients affected by the Ehlers-Danlos syndrome call upon the Minister of Health and Social Services to intervene urgently in order to improve the medical management of those who suffer from this orphan disease. Even if the Ehlers-Danlos syndrome has been known for more than 100 years, still today, few doctors know how to recognize it. Patients (often several members of a same family) meander in the health system, going from one specialist to another, without obtaining a diagnosis or with a wrong diagnosis. And, in the case of women, who are more severely affected, they are told to go consult a psychiatrist.

What:	Bilingual press conference
When:	March 15, 2017 at 10 : 00 a.m.
Where:	Centre St-Pierre, Room Marcel-Pépin 1212, Panet Street, Montreal

Our spokespeople are:

• Ms Gail Ouellette, President and CEO, Regroupement québécois des maladies orphelines/Quebec Coalition of Orphan Diseases
• Ms Valérie Guyot, a patient affected by Ehlers-Danlos syndrome
• Ms Cindy Leclerc, a patient affected by Ehlers-Danlos syndrome
• Mr Robert Sones, a father affected by Ehlers-Danlos syndrome, and who has two affected daughters

Specialised clinics for Ehlers-Danlos syndrome exist around the world and it was recently announced that Ontario will set one up. However, no concrete action has been taken to help patients overcome the great difficulties that they face with this syndrome in Quebec. That is why the Quebec Coalition of Orphan Diseases calls for the establishment of a specialised clinic for Ehlers-Danlos syndrome and a strategy for rare and orphan diseases in Quebec.

Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome designates a group of hereditary diseases characterised by joint hypermobility and tissue fragility which result in numerous symptoms, including repetitive dislocations, chronic pain and many other disorders of various systems and organs (gastrointestinal, gynecological, vascular, neurological, urological, etc.). It is estimated that thousands of Quebecers are affected by Ehlers-Danlos syndrome.

SOURCE Regroupement québécois des maladies orphelines (RQMO)

To confirm your presence, to obtain an interview or for more information, contact: Catherine Hamel, communication consultant, Regroupement québécois des maladies orphelines, [phone] - [email protected]