Our History
The ILC Foundation to EDS Canada Foundation
May 2010
The ILC Charitable Foundation is founded, achieving charitable status in 2012
2011
Medical Workshop to review the 21 day program from the Mayo Clinic to reflect the Canadian medical and educational needs
January 2013
The ILC Foundation and the Ministry of Health hold meetings to discuss the gaps in care for children and families with Chronic pain and EDS
November 2013
The ILC holds its first medical conference with international specialists to discuss the needs for diagnostic criteria for EDS
October 2014
The ILC presents an 8,000-signature petition to the legislative assembly of Ontario, asking for the names of neurosurgeons treating EDS patients
November 2014-2016
CME accredited conference through McMaster University
April 2016
Advocacy work by The ILC and stakeholders prompts the release of the Ehlers-Danlos Expert Panel Report in 2015 and contributes to the creation of the Ehlers-Danlos Syndromes Clinics by the Ministry of Health and Long-Term Care
November 2017-2020
CME accredited conference through University of Toronto
January 2018
Meet with the Provincial Neurosurgery Advisory Committee to discuss the neurosurgical needs of the community we serve
April 2018
The ILC in collaboration with the community we serve, conducted a add actual survey name EDS Neurosurgery Patient Survey
2020
Brand redesign to capture evolving community needs; ten years later no change in care or support
2021
Started academic partnership with McMaster
March 2022
The Foundation and the Ministry of Health resume discussions about the ongoing lack of care for individuals with EDS and chronic pain
October 2022
Petition to re-address the 8000 signatures from 2014. The ILC asks the government to review the lack of neurosurgeons with the skills and expertise in EDS to care for this population
November 2022
CME accredited conference through Northern Ontario School of Medicine
April 2023
The ILC launches The Canadian EDS 2023 Conference Series that has grown to double in attendance
June 2024
The ILC Foundation is now operating as EDS Canada Foundation! We heard from the community we serve that our name needs to reflect them and what we do.
Facts
- EDS Canada Foundation removes significant barriers and reduces the high cost to various ministries and society as a whole.
- EDS is a cluster of syndromes with 13 types, connective tissue and chronic pain disorder, believed to affect 1 in 300 people
- EDS are considered a highly under-diagnosed condition leaving people and parents suffering in anguish and silence
- Chronic pain and EDS result in a $60 billion loss to the Canadian economy.
- No two EDS patients with the same type of EDS present the same way, including in identical twins.
- Chronic Pain affects 1 in 5 Canadians and people of all ages, including children; there is limited understanding, and as a result, proper care and support are lacking
- Many EDS patients have reported that their physician has fired them as they are “too complex,” and “takes too much of my time to manage.”
