ERN ReCONNET in the support of the EDS & HDS Awareness Month
May 29th, 2024 – 16.00 CEST. EVERYTHING YOU ALWAYS WANTED TO KNOW ABOUT EHLERS-DANLOS SYNDROMES (EDS). Speaker Prof. Fransiska Malfait moderated by Mrs. Charissa Frank and Mrs. Eva Collado, ePAG EDS Representatives.
Registration is open.
ERN ReCONNET represents all the types of Ehlers-Danlos syndrome (EDS) and Hypermobility spectrum disorders (HSD), except for vascular EDS.
The Network together with Charissa and Eva, our ERN ReCONNET ePAG representatives for EDS and HSD, wanted to celebrate the EDS and HSD International Awareness Month, by hosting a live, interactive, cross-border, and patient-centred webinar about ‘Everything you always wanted to know about EDS and HSD’ where Prof. Fransiska Malfait, co-chair of the ERN ReCONNET EDS Disease Group will be ready to answer to the questions submitted by patients.
We are excited to try this new format and would like to ask for your contribution!
A few details about the survey and the webinar.
What?
“‘Everything you always wanted to know about EDS and HSD”’ will be an interactive live webinar, focused on the patient’s and carer’s needs.
EDS and HSD patients and carers can send their questions prior to the webinar.
It will be in English, but live translation captions will be made available.
Who?
Expert speaker: Prof. Fransiska Malfait, Associate Professor affiliated with the Center for Medical Genetics (CMGG) at Ghent University Hospital and the Department for Biomolecular Medicine at Ghent University (Belgium).
Moderators: Eva Collado, vice-president of ANSEDH (Spanish EDS and HSD patient organization) and Charissa Frank, president of Bindweefsel.be (Belgian EDS and HSD patient organization).
When?
The webinar will be held on 29th May, 2024 at 16:00 CEST.
Registration is free and open.
Where?
The webinar will be hosted via Zoom. Please register for the webinar through this link.
How?
Would you like your question to be answered? Submit it! You can submit up to 3 questions in your own language! The survey has been translated in #8 different languages and it only takes less then 10 min to do it.
We will try to answer as many questions as possible during the webinar. For those questions that might remain unanswered, we will do our best to have them answered after the webinar and make the info available on the ERN ReCONNET website.
The time of solving all your questions is now! Join us in this journey to spread knowledge about EDS and HSD.
Thank you for your interest and collaboration! We look forward to welcoming you at our webinar!
