EDS ECHO Summit Series: Pediatric & Adolescent Concerns in EDS & HSD

EDS ECHO Summit Series: Pediatric & Adolescent Concerns in EDS & HSD
October 15, 2022

The Ehlers-Danlos Society, in association with the International Consortium on EDS and HSD, and members of the AHEAD – Action for Children, Adolescents, & Young People with HSD & EDS Accurate Diagnosis coalition, is hosting a dedicated EDS ECHO Summit event focusing on pediatric and adolescent concerns in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Join us as leading experts discuss the diagnosis of EDS and HSD and a range of presentations of ill-health in younger people.

Who is this event for?

This one-day event is suitable for both healthcare professionals, and members of the EDS and HSD community, their families, and caregivers. It will take place on October 15, 2022, from 08:25 AM – 3:00 PM Eastern Time. (Please use your preferred time zone converter to find the correct times in your location)

This event has been approved for up to 5.25 CME/CEU/CE Credits, which will be available for health professionals to claim for sessions that are viewed LIVE.

The objectives of this event are to:

  • Recognize and more confidently diagnose hypermobility spectrum disorder (HSD) and its associated conditions in children and adolescents.
  • Understand when and how to assess for the types of Ehlers-Danlos syndrome (EDS) in younger people.
  • Appreciate the complexity of presentations in EDS and HSD and how these may inappropriately be thought factitious, and the impact of this.
  • Increase awareness of unconscious bias and its impact on clinical practice.

The day will cover topics including:

  • Pediatric criteria updates for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD)
  • Comorbidities in pediatrics
  • Fractures, bruising and bleeding
  • Medicalized child abuse: A focus on empirical evidence and navigating concerns with healthcare

How can I watch this event?

The event will take place online via Zoom Webinar. Once registered, you will be sent information about how to join this event live.

If you have questions please email events@ehlers-danlos.com.

Registration is Now Open!

Choose from the options below to register for the EDS ECHO Summit Series: Pediatric Concerns in EDS & HSD event.


The numbers below include tickets for this event already in your cart. Clicking "Get Tickets" will allow you to edit any existing attendee information as well as change ticket quantities.
Virtual Ticket
Ticket purchasers must be 18 and over. Under 18's may watch with parents or guardians under their supervision.
Ticket price includes:
  • • Access to view all sessions live on October 15, 2022.
  • • Lifetime on-demand access to the recordings of the event, available to ticket holders to watch from October 16, 2022.
$ 50.00
Please note: You must purchase a virtual ticket in addition to the CME Add-On in order to attend this event Add this option if you are a healthcare professional and you would like to claim continued medical/educational credits. Available to claim for all sessions viewed live.
$ 50.00

Can’t attend live? Register anyway and we’ll send you a link to the full recordings the day after the event airs.

Presentation Title


Session 1: Children and Adolescents with Hypermobility Spectrum Disorders and Ehlers-Danlos Syndromes Chair: Donna Sullivan
Welcome to Session 1 Donna Sullivan
Pediatric Joint Hypermobility: 2022 Diagnostic Framework Dr. Louise Tofts
Comorbidities in Pediatric Joint Hypermobility Dr. Verity Pacey
Further Evaluation and Differential Diagnosis For the Child Who May Have Hypermobile EDS (hEDS) Dr. Ellen Elias
Session 2: Fractures and Bleeding Chair: Dr. Alan Hakim
Welcome to Session 2 Dr. Alan Hakim
Assessment of Fractures, Bruising and Bleeding in Infants Dr. Sarah Schwartz
The Genetic Evaluation for Pediatric Patients Presenting with Fractures and Bleeding Dr. Ellen Elias
The Summary of the Current Research Evidence for Fracture and Bleeding in Paediatric Generalised Joint Hypermobility and HSD Dr. Louise Tofts
Session 3: Medicalized Child Abuse: A Focus on Empirical Evidence and Advice on Navigating Concerns with Healthcare Professionals, with Recommendations for Mitigating False Accusations Chair: Donna Sullivan
Welcome to Session 3 Donna Sullivan
Common Themes Evident in the UK in Relation to FII Emma Louise Williams
What to Expect When You Are Suspected: Navigating the Unexpected Waters of False Allegations Rana Tyson
Practical Advice for Parents and Carers Regarding Avoiding False Allegations of Fabricated or Induced Illness (FII) and Over-Medicalisation Emma Louise Williams
Session 4: Unconcious Bias Chair: Dr. Alan Hakim
Welcome to Session 4 Dr. Alan Hakim
Biases in Healthcare: An Overview for Individuals with EDS/HSD and Co-morbid Disorders Dr. Anne Maitland
The Long and Winding Road… Reducing Unconcious Bias Dr. Philip Bull
Reflections on Unconscious Bias Dr. Alan Hakim
Panel Discussion

Sponsor This Event

Sponsorships are available for this conference; please see our prospectus and commitment form, or contact the development team at giving@ehlers-danlos.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

AMA Designation Statement
Project ECHO® designates this live activity for up to 5.25 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.

Prof. Lara Bloom, Stacey Simmonds, Sacha Aziz, Dr. Alan Hakim, Dr. Ellen Elias, Dr. Philip Bull, Donna Sullivan, Rana Tyson, Emma Louise Williams, Dr. Sarah Schwartz, Dr. Verity Pacey 

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

Nature of Relationship Name of Ineligible Company
Dr. Anne Maitland Speaker Blue Print Medicines
Dr. Louise Tofts Researcher, Advisor Biomarin
Dr. Clair Francomano Consultant, Advisor Acer Therapeutics, Kyani International


All of the relevant financial relationships listed for these individual(s) have been mitigated.