Rare Diseases

Ehlers-Danlos syndromes: some light at the end of the tunnel

This session is intended for Caregivers, Patients, Professionals, Members of the General Public

The Ehlers-Danlos syndromes (EDS) and the hypermobility spectrum disorders are still unkown, not well known or not recognized in our health system. Yet, they are much more frequent then was thought in the past. How can we differentiate all these disorders?

After two years of work by the International Consortium on Ehlers-Danlos syndromes – initiated by patients from the EDS Society – finally, clarifications concerning the classification of the various EDS syndromes and hypermobility disorders will be published.

This webinar will inform you on the consensus established by these world experts. You will find out the difference between the EDS syndromes as such (particularly the most frequent type, EDS hypermobile type) and the new category of “hypermobility spectrum disorders”. We will also review the spectrum of symptoms associated with EDS:  pain, gastrointestinal, neurological, immunological, musculoskeletal, dermatological, vascular, etc.

Posted in:
  1. Gail Ouellette is a geneticist (Ph.D.) and a genetic counsellor (M. Sc.). She is also the President & CEO of the Regroupement québécois des maladies orphelines (Quebec Coalition of Orphan Diseases). She set up the Rare Disease Information and Resource Centre in Quebec which has also become a support centre for d’Ehlers-Danlos syndrome. Gail Ouellette participated in the two international symposia on this syndrome and in the continued education sessions in Ontario. She is a member of the medical committee of the ILC/Canadian Ehlers-Danlos Foundation. Since 2015, she teaches in the « Ehlers-Danlos Syndrome » University Diploma given by the Université Paris-Créteil (France) for physicians and other health professionals.

2 Comments

  1. I was able to connect with the webinar (on EDS) initially from my workplace however it kept stopping or could hear no voice for > 75% of the time. I disconnected and then was unavle to reconnect- it said the event was recorded and to check back later…Have given up for now but am still interested in accessing the info presented.

    • Hello Pamela,
      We are sorry to hear you ran into some technical issues during the event. If the sound was stopping this was porbably coming from your internet speed connection. When the internet’s speed slows down the sound stops functionning properly.
      I would suggest closing any open windows on your computer and avoid any dowloading or streaming.
      If ever you wish to reconnect to a webinar, you should look for your confirmation email with all of the information related to the event.
      I wish to rewatch the event, all of our events are recorded and archived under the different Channels. All recordings are added to our website within 7 days after the event.
      To find the recording, simply use the search function at the top of our website or go to the specific channel (rare diseases) and search by date.
      Regards,

Leave a comment