2023 Global Learning Conference

Difficult Conversations in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)

August 2-5, 2023

The Ehlers-Danlos Society’s 2023 Global Learning Conference was a hybrid event, which took place in Dublin, Ireland from August 2-5, 2023.

Leading experts presented on a range of topics including the following:

  • Effective communication for medical appointments
  • Managing a symptom flare
  • Movement and physical therapy
  • Neurodivergence
  • Gastrointestinal issues and nutrition

Recordings are now available to purchase to watch on demand. Please click below to purchase the recordings and to view the event agenda.

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View the Event Agenda

Explore our live, interactive agenda for the 2023 Global Learning Conference.

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Learn More About Our Speakers

Thank You To Our Event Sponsors!

Partner 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.

https://bodybraid.com/

Partner 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.
Clinically proven, comfortable orthosis with patient testimonials.
Our orthoses are clinically proven with some linked to evidence-based research. You can find out more about our research in our research & development section.
We are dedicated to research & development
We aspire to maintain our consistently high standards and are always looking ahead to see what advances can be made for the future, in order to continually find innovative developments for all our orthoses.

https://www.dmorthotics.com

Collaborator Sponsor

Lipedema Foundation

Lipedema is a chronic medical condition characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms that occurs almost exclusively in women. It is a common but underrecognized disorder. Lipedema may cause pain, swelling, and easy bruising and be accompanied by an unusual texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin.  

At the Lipedema Foundation, we support collaborative research that addresses the basic biology, genetics, and epidemiology of lipedema with a mission to define, diagnose and develop treatments. 

Please visit our website to learn more about the Lipedema Foundation. 

https://www.lipedema.org/

Non-Profits & Advocates Sponsor

The Irish EDS Foundation

The Irish EDS Foundation and support group was established 10 years ago, to raise awareness and offer support for those diagnosed with and seeking a diagnosis of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in Ireland.
Our aim is to raise public awareness about Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder including its comorbidities, and share valid information, in the hope that more patients can receive the correct dagnosis and treatment.
We currently have over 1200 members in our private support group who are diagnosed with EDS/HSD.

Read more

Supporter Sponsor

Silver Ring Splints

In 1974, occupational therapist Cynthia Garris was forced to take a new look at splint therapy – in that year, she was diagnosed with Rheumatoid Arthritis. She had long believed in the value of splinting, but soon realized that none of the existing technologies addressed the long-term use of splints. While plastic splints were adequate for treating short-term trauma, they were not an ideal solution for lifetime wear. In 1985, she set out to design and manufacture a new series of splints that were both more effective and more attractive than the splints then in use. In the process, she revolutionized splint therapy.
Whether they need finger stability for hand-intensive work or for everyday tasks like cooking and holding a pencil, thousands of people have made SilverRing™ Splints a valued part of their everyday lives. SilverRing™ Splints encourage complete patient well-being, medically effective hand therapy and a positive self-image.

www.silverringsplint.com

Supporter Sponsor

Bionical Emas

Bionical Emas is a global Contract Research Organization (CRO) combining Clinical Development, Clinical Trial Supply (CTS), and Early Access Programs (EAP) bringing life-changing medicines to patients around the world. Their unique integrated business model, with its range of services and capabilities, benefits many of the world’s leading pharma and biotech companies. This distinctive offering enables them to maximize access and evidence generation at every stage of the drug development pathway. Bionical Emas has a dedicated Rare Disease Team that consists of Global Patient Advocacy and Rare Disease Insights Specialists who drive their strong focus on patient centricity and customize clinical development and early access programs, to ensure they are carefully designed to meet the nuances and requirements that a rare disease can present.

bionicalemas.com

Supporter Sponsor

Zebra Splints

Here at Zebra Splints, our mission is simple-to provide high-quality ring splints to help those who are suffering from pain and disability. Each splint is precision handcrafted by a professional silversmith with 20 years of experience in the jewelry industry and 8 years of dedicated experience in the design and fabrication of comfortable and effective metal ring splints. It has always been our main goal to keep pricing low so that our splints are as accessible as possible, so unlike many other places, we sell at cost.

We have dedicated ourselves to the study of hand conditions and splinting to ensure we’re able to provide knowledgeable support and use all hypoallergenic metals so even those with severe metal sensitivities have options. Everything is done at cost in the hopes of making them accessible for all.

zebrasplints.com

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_Commendation

AMA Designation Statement 

Project ECHO® designates this live activity for a maximum of 19.5 AMA PRA Category 1 CreditsTM.  Physicians 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 ineligible 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. 

Prof. Lara Bloom, Dr. Alan Hakim, Stacey Simmonds, Dr. Aiko Callahan, Dr. Amanda Cassil, Amelia Rinker, Dr. Andrea Wood, Dr. Anjali Agarwal, Ann Rodiger, Dr. Anne Brito, Anoushé Husain, Becky Berry, Bonnie Nasar, Dr. Colin Halverson, Dr. Dacre Knight, Dr. Darby Dickton, Dayn Broder, Dr. Derik Anderson, Filipa Rodrigues, Prof. Fransiska Malfait, Dr. Hani Hattar, Dr. Helen Cohen, Helen Spriggs, Jacqui Main, Jane Green, Jessica Kellgren-Fozard, Dr. Judith Simms-Cendan, Laurie Bilyeu, Dr. Linda Bluestein, Dr. Lisa Belvy, Lorna Ryan, Mackenzie Abramson, Martha Wiggin, Megan Karanfil, Melissa Williams, Dr. Natalie Blagowidow, Dr. Netali Levi, Rebecca Mass-Krajewski, Sarah Clark, Scarlett Eagle, Dr. Shilpa Gajarwala, Sophie Roberts, Dr. Tina Wang. 

The following planners / presenters listed below have disclosed that they have a relevant financial relationship with an ineligible company. 

Nature of Relationship Name of Ineligible Company
Dr. Akilah Cadet Consultant Evidation, Ultragenyx
Dr. Cynthia Neville Employee, Consultant Mayo Clinic Florida, Atlantic Therapeutics
Prof. Qasim Aziz Researcher Takeda pharmaceuticals, Clasado Pharma
Dr. Mark Pimentel Consultant, Individual Stocks and Stock Options, Executive Role Bausch Health, Ferring, Vivante Health, Salvo Health, Ardelyx, Gimelli Biotech
Patricia Stott Independent Contractor Home CEU, MedBridge
Alena Guggenheim Consultant Proctor and Gamble

All of the relevant financial relationships listed for these individuals have been mitigated.

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