EDS & HSD Untangled: Ask the Experts – A Hybrid Conference

Join us Sunday, September 18, 2022!

EDS and HSD Untangled: Ask the Experts is the Community Day of the International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders; a hybrid event, taking place in Rome, Italy, with an exciting virtual attendance option for people worldwide.

This event is suitable for members of the EDS and HSD community, their families, and caregivers. Healthcare Professionals who wish to learn from a lay perspective are also encouraged to join us for Community Day. This event has been approved for up to 23.5 CME/CEU/CE Credits, which will be available for healthcare professionals to claim for sessions that are viewed LIVE.

An exciting agenda will feature presentations on:

  • Gastrointestinal Complications
  • Pain in EDS and HSD
  • Neurodiversity and Mental Health
  • Autonomic and Mast Cell Issues
  • Pregnancy
  • Ear, Nose, and Throat (ENT) and Breathing Issues in EDS and HSD

Register here to join us in person in Rome, Italy.

Register here to join us virtually, from anywhere in the world you have WiFi.

Listen In Your Own Language

Presentations will be made in English. We are pleased to be offering live simultaneous translations of this event to all event attendees, the languages offered will be Italian, French, and Spanish.

Venue Details

The Roma Eventi – Fontana di Trevi Conference Centre is situated in the heart of Rome, a short walk from The Quirinale and the Fontana di Trevi (Trevi Fountain).

Location name and address:

Roma Eventi
Fontana di Trevi, Piazza della Pilotta 4
Rome, 00187 IT

Connect With Other Attendees!

Our free event app Whova allows you to have online conversations with in-person and virtual conference attendees, take part in polls, view the event agenda, and re-watch the sessions at a time that is most suitable for you. You can access the app via phone, tablet, or web browser.

For some useful tips on getting the most out of Whova, click here.

Ask The Speakers Your Questions Live

You will be watching the event live via Zoom. The question and answer (Q&A) feature on our Zoom webinar allows you to ask questions during the event to the speakers.

Questions for the Q&A sessions can also be posted via the Whova app under the relevant presentation and will be collated for speakers to answer.

Enjoy Lifetime On-Demand Access to Presentation Recordings

All presentation recordings and PDFs from EDS & HSD Untangled: Ask the Experts will be recorded, and will be made available to event attendees around a week after the event. Attendees will have lifetime access to these resources.

As part of the agenda for this event, we are looking for community members to participate as Community Experts.

If you are selected to participate, your role will entail being interviewed by a healthcare professional about living with one of these issues during the event. You and the healthcare professional interviewing you will be briefed on the interview questions beforehand. The interview will last up to 30 minutes, then we will open to questions from the audience for 30 minutes. We hope to give the audience insight into both the doctor and community perspectives on these topics through these Community Expert segments.

Community Experts will participate in person in Rome, Italy, and must be attending the event to be considered. Complete the application form here if you would like to take part.

Scholarships Applications Are Now Open!

Thanks to the generosity of our donors, The Ehlers-Danlos Society is able to offer a number of virtual scholarships to offer. Scholarships for virtual registrations provide all privileges of a full-paying attendee, which include access to the event, the event app, and the recordings afterward.

Applications will be accepted through August 15, 2022.


In support of improving patient care, this activity has been planned and implemented by the Ehlers-Danlos Society and Project ECHO.  Project ECHO® is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Project ECHO

AMA Designation Statement
Project ECHO® designates this live activity for up to 23.5 AMA PRA Category 1 CreditsTMPhysicians should claim only the credit commensurate with the extent of their participation in the activity.

Disclosure Statement
Project ECHO®, in compliance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education, requires that anyone who is in a position to control the content of an educational activity disclose all relevant financial relationships they have had within the last 24 months with an eligible company.

None of the planners and presenters for this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.

Dr. Peter Byers, Dr. Clair Francomano, Dr. Marco Castori, Dr. Cecilia Giunta, Prof. Fransiska Malfait, Dr. Alan Hakim, Prof. Lara Bloom, Stacey Simmonds, Sacha Aziz, Dr. Anne Maitland, Dr. Anthony Vandersteen, Dr. Antonio Bulbena-Vilarrasa, Dr. Carmine Settembre, Dr. Carolina Baeza Velasco, Dr. Chad Shepherd, Dr. Chip Norris, Dr. Christina Kaufman, Dr. Christina Laukaitis, Dr. Delfien Syx, Dr. Emily Casanova, Dr. Fleur van Dijk, Dr. Frances Yeung, Dr. Fraser Henderson, Dr. Gisela Chelimsky, Dr. Glenda Sobey, Dr. Hal Dietz, Dr. Helen Cohen, Dr. Hyo-Jung Jeong, Dr. Ilene Ruhoy, Dr. Ines Kapferer-Seebacher, Dr. Isabelle Brock, Dr. Jane Simmonds, Dr. Janine Meienberg, Dr. Jared Fletcher, Jeannie Di Bon, Dr. Jessica Eccles, Dr. Katja Kovacic, Dr. Laura Pace, Laura Prigent, Dr. Leema Robert, Dr. Leonardo Zoccante, Lies Rombaut, Lisanne de Koning, Lorna Ryan, Dr. Louise Tofts, Dr. Lucia Micale, Marc Thomas Schoenholzer, Dr. Marco Ritelli, Dr. Mariana Castells, Dr. Marianne Rohrbach, Dr. Marlies Colman, Dr. Matt Bolz-Johnson, Dr. Matthew Hamilton, Dr. Michael Frank, Dr. Najla Alsiri, Niamh Wilkinson, Dr. Qasim Aziz, Dr. Raoul Engelbert, Dr. Raymond Dalgleish, Robin Vroman, Roy Morello, Prof. Shea Palmer, Dr. Sherene Shalhub, Sophie Roberts, Dr. Taylor Petrucci, Dr. Verity Pacey, Vincent Guinchat, Dr. Yoshihiro Ishikawa, Bonnie Nasar, Mo Maarj, Laurie Bilyeu, Helen Spriggs.

Thank You to Our Event Sponsors!

Partner Sponsor

Aytu BioPharma

Aytu is committed to improving the health of all children. Our portfolio of products with a focus on ADHD help children live their best lives. Aytu is also developing potentially life-saving products by investing in a near-term pipeline of breakthrough treatments focused on pediatric-onset, rare diseases.

We aspire to be the leading pediatric-focused pharmaceutical company in the world. We will achieve this by commercializing novel therapeutics, providing best-in-class patient access, unleashing the talents of our people, and developing important and needed therapeutics for children of all ages.

  • We will make a lasting difference in children’s lives by delivering the best products to children in need.
  • Our individual actions, collective attitude, and company results will inspire others to do great things.
  • Our people, products, pipeline, and platform will effect positive change in healthcare delivery and patient outcomes.

373 Inverness Parkway, Suite 206
Englewood, CO 80112 USA
1-855 AYTU-BIO


Collaborator Sponsor

DM Orthotics

We provide soft fabric orthoses to help adults and children with challenging conditions like EDS. Our orthoses help with pain management, postural realignment and reduce subluxation and dislocation through the strategic way our fabrics are manufactured, providing you with a product that helps improve daily life.
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Collaborator Sponsor

Body Braid

The Body Braid’s Core Body Braid is a posture support which acts as external connective tissue which helps to reinforce the body’s internal connective tissue. The Core Braid’s soft, elastic fabric bands spiral around the body, engaging the core and gently aligning different body parts into an integrated whole.

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