ILC Community / Ehlers-Danlos Syndrome

The ILC Foundation began because of the gaps in awareness and care for EDS. Through our Board of Trustees, we are aligned with the Ehlers-Danlos Syndrome National Foundation (www.ednf.org) in the United States, where a broad understanding is shared through collaborations including ILC’s Difficult to Diagnose Disease Program for the development of best practices for the diagnosis, treatment and care of EDS for children and adults.

Children & EDS

 US National Library of Medicine http://www.nlm.nih.gov/  National Institutes of Health http://www.nih.gov/  North America Journal of Medical Science National Institutes of Health http://www.nih.gov/  PubMed AN EDUCATORS GUIDE Meeting the Needs of the Ehlers-Danlos Child / A PARENTS GUIDE Helping Your Child Succeed at School https://ehlers-danlos.com/wp-content/uploads/Educator-Parent-Guide-2016.pdf Unexplained facial scar: Child abuse or Ehlers-Danlos syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264297/ Quality of life prediction […]

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EDS ILC Presentations

Conference Board of Canada – Access to Affordable Medications: Conference Board of Canada http://www.conferenceboard.ca/Libraries/CONF_PRES_PUBLIC/17-0064_a3_smeenk.sflb McMaster & ILC EDS Conferences CAPHC 2012 CAPA 2012

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Services

October 3rd, 2017

Ehlers-Danlos Syndrome, ILC Community

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The ILC provides a comprehensive range of family-centred support services to parents with children, youth and individuals with chronic pain and Ehlers Danlos Syndromes.  The ILC Online Resource Centre provides helpful tips, information and other resources offered by the ILC and the community. The external resource links are provided for informational purposes only. The ILC is not responsible […]

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EDS Ontario’s Special Needs Strategy

The Ministries of Children and Youth Services, Community and Social Services, Health and Long-Term Care, and Education are implementing a strategy to improve services for children/youth with special needs in Ontario. The Special Needs Strategy will support the vision of “An Ontario where children and youth with special needs get the timely and effective services they need to participate fully at home, at […]

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2017 EDS International Classification

In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time management and care guidelines have also been produced for the co-morbidities […]

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2017 EDS International Classification

In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time management and care guidelines have also been produced for the co-morbidities […]

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Canadian Press Announcement for EDS Clinic – February 27, 2017

The ILC Charitable Foundation Ehlers Danlos Division team, including its medical advisers continues to work closely with the Ministry of Health, the Hospital for Sick Children and the University Health Network with the announcement of expanding clinics for people living with rare diseases and EDS. Link to article The ILC Charitable Foundation Ehlers Danlos Division […]

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What I Wish People Understood About Losing My Career Due to a Disability

Author: Cindy Belz What I Wish People Understood About Losing My Career Due to a Disability In 2003 Ehlers Danlos Syndrome took my career. Until then, I had an amazing job. I made a great income and I was so happy with what I did and what I planned to do. I did not know […]

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News Release – statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN

The ILC Charitable Foundation – Ehlers Danlos Division Over the last few weeks, recent reports in the media related to a University Health Network (UHN) based neurosurgeon, Dr Shamji, has caused concern regarding the future care for patients with Ehlers Danlos Syndrome (EDS) at the UHN. We have been in touch with the UHN to […]

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EDS Division History

October 3rd, 2017

Ehlers-Danlos Syndrome, ILC Community

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EDS is a not so rare but rather a difficult to diagnose multisystem connective tissue disorder that is often misdiagnosed, misunderstood and certainly under-serviced. “People living with Ehlers-Danlos Syndrome and other rare diseases face enough challenges on a daily basis that finding the right care and support in Ontario shouldn’t be one of them. The […]

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  • 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
    Sandy@theilcfoundation.org

  • Research Projects

  • National Pain Strategy

  • Recent Articles

  • Upcoming Events

    1. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      October 21, 2017 @ 12:00 pm - 2:00 pm
    2. ILC 5th Annual Ehlers Danlos & Chronic Pain Conference

      November 4, 2017 - November 5, 2017
    3. Ontario Peer Support Meeting – Toronto, Ontario

      November 4, 2017 @ 12:00 pm - 3:00 pm
The ILC Foundation

The ILC Foundation