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.

Part 1:

Part 2:

EDS Pain

  • Ehlers Danlos Division

    Ehlers Danlos Division of the ILC

    To inspire hope and contribute to the health and well-being of children and individuals living with Ehlers Danlos Syndrome (EDS) by providing a care model of health promotion and knowledge sharing partnerships through a family centred, awareness and education resource network.

  • Announcements

    ILC Centre of Excellence – Toronto Stay Tuned

    ILC Support and Accessibilities Centre specializing in EDS and related conditions that cause altered physical abilities – Stay Tuned

    For more information, contact

  • Research Projects

  • National Pain Strategy

  • Upcoming Events

    1. Ontario Peer Support Meeting – Oakville, Ontario

      April 29 @ 12:00 pm - 3:00 pm
    2. Uptown Hair Studio Cut-a-Thon

      May 7
    3. Halifax Support Group Meeting

      May 7 @ 10:00 am - 12:00 pm
    4. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      May 20 @ 12:00 pm - 2:00 pm
    5. Ontario Peer Support Meeting – Location TBD

      May 27 @ 12:00 pm - 3:00 pm