Knowledge Base / Ehlers-Danlos Syndrome

Mission: 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.

EDS Clinic

The Ehlers-Danlos Syndrome (EDS) Program is a collaboration between University Health Network (UHN) and The Hospital for Sick Children (HSC) and focuses on clinical care, education, and research. This joint program provides a centralized approach in the diagnosis and management of EDS. http://www.uhn.ca/MCC/PatientsFamilies/Clinics_Tests/Ehlers-Danlos_Syndrome_Clinic

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About the ILC EDS Division

November 18th, 2017

Ehlers-Danlos Syndrome, Knowledge Base

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 […]

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ILC Collaborative Portal

Visit the ILC Collaborative Portal to connect with patients, parents, caregivers and share your stories and experiences. Professionals can connect with like minded peers who will provide a source of relevant, peer ranked information, and engaging collaboration.

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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

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 […]

Read more

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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  • 2017 Conference Videos and presentation documents are now available here
  • 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. Halifax Support Group Meeting

      December 10, 2017 @ 10:00 am - 12:00 pm
The ILC Foundation

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