The ILC Foundation Difficult to Diagnose Disease Ehlers-Danlos Syndrome Canada Program
Ehlers-Danlos Syndrome (EDS)
The ILC influences and facilitates awareness and education of Ehlers-Danlos Syndrome (EDS) through the Difficult to Diagnose Disease Program to bridge gaps in best practices for the diagnosis, treatment and care of this chronic pain disease.
Sandy Smeenk, Executive Director of ILC met with two #EDS families in Sherbrook, Quebec and worked to secure a CBC reporter to cover a story about the magnitude of problems #EDS families face when best practices do not exist for the diagnosis, treatment and care of this chronic pain disease. CBC Radio aired their two-part story about #Ehlers-Danlos Syndrome on February 27th & 28th, 2014. It features Genetic Councellor Dr. Gail Ouellette, #Dr. France-Valerie Roy who also lives with EDS and two other families.