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 – 3:20 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 5.5 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 and increase awareness of unconscious bias and its impact in clinical practice.
  • Appreciate the complexity of presentations in EDS and HSD and how these may inappropriately be thought factitious, and the impact of this.

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.

Time in ET (Eastern Time)

Presentation Title


8:00 AMWebinar Opens For Attendees To Join
8:15 AM – 8:25 AMWelcome to the Event
Session 1: Children and Adolescents with Hypermobility Spectrum Disorders and Ehlers-Danlos SyndromesChair: Donna Sullivan
8:25 AM – 8:28 AMWelcome to Session 1Donna Sullivan
8:28 AM – 8:48 AMPediatric Joint Hypermobility: 2022 Diagnostic FrameworkDr. Louise Tofts
8:48 AM – 9:13 AMComorbidities in PediatricsDr. Verity Pacey
9:13 AM – 9:47 AMFurther Evaluation and Differential Diagnosis For the Child Who May Have Hypermobile EDS (hEDS)Dr. Ellen Elias
9:47 AM – 10:00 AMQ&A
Session 2: Fractures and BleedingChair: Dr. Alan Hakim
10:10 AM – 10:15 AMWelcome to Session 2Dr. Alan Hakim
10:15 AM – 10:45 AMAssessment of Fractures, Bruising and Bleeding in InfantsDr. Sarah Schwartz
10:45 AM – 11:14 AMThe Genetic Evaluation for Pediatric Patients Presenting with Fractures and BleedingDr. Ellen Elias
11:14 AM – 11:30 AMThe Scientific Evidence on Fractures and Bleeding in Pediatric Hypermobility and EDSDr. Louise Tofts
11:30 AM – 11:45 AMQ&A
Session 3: Medicalized Child Abuse: A Focus on Empirical Evidence and Advice on Navigating Concerns with Healthcare Professionals, with Recommendations for Mitigating False AccusationsChair: Donna Sullivan
12:00 PM – 12:03 PMWelcome to Session 3Donna Sullivan
12:03 PM – 12:32 PMCommon Themes Evident in the UK in Relation to FIIEmma Louise Williams
12:32 PM – 12:47 PMWhat to Expect When You Are Suspected: Navigating the Unexpected Waters of False AllegationsRana Tyson
12:47 PM – 1:12 PMPractical Advice for Parents and Carers Regarding Avoiding False Allegations of Fabricated or Induced Illness (FII) and Over-MedicalisationEmma Louise Williams
1:12 PM – 1:30 PMQ&A
Session 4: Unconcious BiasChair: Dr. Alan Hakim
2:00 PM – 2:05 PMWelcome to Session 4Dr. Alan Hakim
2:05 PM – 2:25 PMBiases in Healthcare: An Overview for Individuals with EDS/HSD and Co-morbid DisordersDr. Anne Maitland
2:25 PM – 2:47 PMThe Long and Winding Road… Reducing Unconcious BiasDr. Philip Bull
2:47 PM – 3:03 PMReflections on Unconscious BiasDr. Alan Hakim
3:03 PM – 3:15 PMPanel DiscussionDr. Clair Francomano, Dr. Anne Maitland, Dr. Philip Bull, Dr. Alan Hakim
3:15 PM – 3:20 PMClose & GoodbyeProf. Lara Bloom

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 5.5 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.

Prof. Lara Bloom, Stacey Simmonds, Sacha Aziz, Dr. Alan Hakim, Dr. Ellen Elias, Dr. Philip Bull, 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 RelationshipName of Ineligible Company
Dr. Anne MaitlandSpeakerBlue Print Medicines
Dr. Louise ToftsResearcher, AdvisorBiomarin
Dr. Clair FrancomanoConsultant, AdvisorAcer Therapeutics, Kyani International
Donna SullivanIndependent ContractorTrain pain, Pathways To Trust


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

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