Events

Latest Research Updates in Ehlers-Danlos Syndrome & Connective Tissue Disorders

The Fascia Research Society is delighted to welcome Lara Bloom, President and CEO of The Ehlers-Danlos Society, for an upcoming webinar exploring the latest advances in research on Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related connective tissue conditions.

Lara Bloom leads global efforts to raise awareness and drive progress for rare, chronic, and often invisible conditions. Her work spans international medical collaboration, research funding, education, and patient advocacy, with a strong emphasis on meaningful patient engagement. She was appointed Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine on March 11, 2020, recognizing her more than ten years of leadership in patient advocacy, education, and global collaboration in rare and chronic disease. 

As a widely published and an internationally sought-after keynote speaker, Lara also serves as Vice-Chair of the Board of the International Alliance of Patients’ Organizations and as a Board Member of Genetic Alliance UK. In June 2025, she received the prestigious Made with Patients Award at the Patient Engagement Open Forum (PEOF), and was named a 2025 D-30 Disability List Honoree by Diversability, recognising her contribution to patient-centred global advocacy.

Webinar Overview
In this webinar, Latest Research Updates in Ehlers-Danlos Syndrome & Connective Tissue Disorders, Lara will share key developments from recent global studies advancing understanding of EDS and related conditions.

The session will explore:

• Emerging developments in genetics and clinical research
• Patient-led initiatives shaping research priorities
• Translating research into real-world care and management
• How scientific advances align with patient experiences and needs

Participants will gain insight into the rapidly evolving research landscape and what these developments mean for diagnosis, clinical practice, and future collaboration across the EDS and connective tissue communities.

Who Should Attend?
This session will be of interest to clinicians, researchers, educators, allied health professionals, students, and anyone interested in connective tissue science and patient-centred research.
We look forward to welcoming you to another thought-provoking FRS webinar.

Date : March 9th
Time: 10am PDT
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Duration: 60 mins
Recording: A 3-month recording access will be shared with all registrants within 72 hours after the webinar, regardless of live attendance.


As an FRS Member, this webinar is FREE. 

• This webinar is FREE.
• No registration is required. 
• Simply join using the Zoom link that will be emailed to you a day before the webinar.
• The webinar link will be sent directly to your registered email address in FRS (please check your spam/junk folder if you do not see it).
• Kindly do not forward the link to others.
• Membership status will be cross-checked with the Zoom attendance report to prevent unauthorised use by non-members.
• Recording will be emailed to all members after the webinar, regardless of live attendance

Non-members can either –

BUY TICKET  FOR THIS WEBINAR @ $50 OR

JOIN AS A MEMBER  @ $150 Annually 

* Non-members will receive a zoom link to this event upon registration. 
* All sales are final, no refunds or exchanges will be issued

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