$35 – $150

Ehlers-Danlos Syndromes and Associated Disorders Education Seminar

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Pierson Auditorium, UMKC, Volker Campus

5000 Holmes St

Kansas City, MO 64110

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Event description
Topics - Genetics, Cardiology, Dysautonomia, Immunology, Pain Management, PT, GI, Occult Tethered Cord and Managing Co-morbidities

About this Event


All tickets must be purchased online before the seminar. No tickets will be sold at the door.

For a printable PDF of the registration brochure with detailed information (agenda, CME information, parking details and more), please visit www.edskc.org

Registration opens at 7:30 AM and seminar starts at 8:15 AM.


National EDS Experts:

  • Newly added speaker!! Petra Klinge, MD, PhD, MA, IFAANS - Brown University and Hasbro Children's Hospital (Neurosurgery)
  • Anne Maitland, MD, PhD - Mount Sinai Hospital (Immunology)
  • Pradeep Chopra, MD, MHCM - Brown Medical School (Pain Management)
  • John E. Fortunato, MD - Ann & Robert H. Lurie Children's Hospital of Chicago (Neurointestinal & Motility Program)
  • Ellen Roy Elias, MD - Children's Hospital Colorado (Genetics)

Local EDS Experts:

  • Eric T. Rush, MD, FAAP, FACMG - Children's Mercy Kansas City (Genetics)
  • Lindsey E. Malloy-Walton, DO, MPH - Children's Mercy Kansas City (Cardiology Electrophysiology)
  • William R. Black, PhD, HSP - University of Kansas Medical Center (Pediatric Pain Psychology)
  • Noelle Dowma, DPT, BFA, PMA-CPT - Kinesphere (Physical Therapy and Pilates)


  • Jordon T. Jones, DO, MS - Children's Mercy Kansas City (Rheumatology)
  • Eric T. Rush, MD, FAAP, FACMG - Children's Mercy Kansas City (Genetics)


7:30 AM - Check In (please note that no tickets will be sold at the door)

8:15 AM - Welcome and Opening Remarks, Wendy Cogan, BSN, Program Chair

8:30 AM - Recent Advances in Diagnosis of Ehlers-Danlos Syndromes, Eric Rush, MD, FAAP, FACMG

9:00 AM - An Overview of Medical Complexities Associated with Ehlers-Danlos Syndromes – An Approach to Diagnosis and Management, Ellen Roy Elias, MD

10:00 AM - Break

10:15 AM - EDS and Your Heart. What You Need to Know, Lindsey Malloy-Walton, DO, MPH

11:00 AM - The Growing Roles of EDS and Orthostatic Intolerance in Pediatric Gastroenterology, John E. Fortunato, MD

11:50 AM - Box Lunch

12:20 PM - Ehlers-Danlos Syndromes and Fellow Traveler Mast Cell Activation Syndrome, Anne Maitland, MD, PhD

1:10 PM - Physical Therapy Specialized for the Patient with Hypermobility Disorders, Noelle Dowma, DPT, BFA, PMA-CPT

1:40 PM - Chronic Pain in Children and Adolescents with Ehlers-Danlos Syndromes, William Black, PhD, HSP

2:10 PM - Break

2:25 PM - Managing the Occult Tethered Cord Syndrome in EDS, Petra Klinge, MD, PhD, MA, IFAANS

3:15 PM - Ehlers-Danlos Syndromes - Connecting the Dots, Pradeep Chopra, MD, MHCM

4:15 PM - Q&A Clinician Panel, moderated by Jordan Jones, DO, MS

5:00 PM - Adjourn

5:00 PM - Post Seminar Concurrent Support Sessions:

  • Teen/Young Adult Patients (ages 12 to mid twenties only)
  • Adult Patients
  • Spouses/Family/Caregivers


Support sessions will follow the seminar and are for patients, family and caregivers. The Teen/Young Adult session is only for ages 12 through mid twenties. If you are a family member of a teen/young adult, please attend one of the other 2 sessions. Sessions will last around one hour.

If you are a healthcare professional with EDS, please feel free to attend the adult patient session. If you are a heathcare professional with a family member with EDS, please feel free to join the Spouses/Family/Caregiver session.

*For questions, contact us at info@edskc.org.

Cancellations: No refunds will be granted for non-attendence, although you may send a substitute.


All medical professionals caring for children or adults with EDS, HSD and their complex conditions. Patients and families with EDS and HSD seeking to learn more. Researchers interested in patient-centered research to determine best prevention and treatment protocals.

Clinical Attendees Course Description:

Many medical disciplines encounter patients with Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and frequent co-morbidities including autonomic dysfunction (postural orthostatic tachycardia syndrome and orthostatic intolerance), mast cell activation syndrome, gastrointestinal disorders and chronic pain. Despite recent advances in EDS diagnostic criteria and care, misunderstandings regarding these conditions are prevalent and EDS remains under recognized. Ehlers-Danlos Syndromes are a group of connective tissue disorders that vary in their genetic cause and expression. Patients often present with varying degrees of complex symptoms across numerous specialty areas and endure significant diagnostic delays. Early diagnosis and treatment is critical for increased quality of life and reduced medical and emotional impacts.

The latest in diagnosis and care will be presented for pediatric and adult patients. The target audience includes primary care providers, specialists and allied health professionals.

Continuing Education Objectives:

Upon completion of this conference, participants should be able to:

  • Discuss the positive and negative aspects of the 2017 EDS International Classification, the new classification system for EDS.
  • Describe the utility of molecular testing in Ehlers-Danlos syndromes and related connective tissue disorders.
  • Explain the connection between different conditions associated with EDS including musculoskeletal, GI, neurological and dysautonomia.
  • Explore patient-centered management for EDS related concerns.
  • Define the relationships between GI symptoms and EDS/joint hypermobility & orthostatic intolerance (OI).
  • Identify cardiac abnormalities associated with EDS.
  • Describe differences between conventional physical therapy interventions and EDS- focused physical therapy.
  • Identity the mechanism of pain and loss of function in EDS.
  • Describe chronic pain in EDS and musculoskeletal disorders and identify current treatment options for chronic pain.
  • Describe the concept of occult tethered cord.
  • Describe the three major forms of disordered mast cell activation.

Continuing Education Credit

CME: Children’s Mercy Hospital is accredited by the Missouri State Medical Association to provide continuing medical education for physicians.

Children’s Mercy Hospital designates this live educational activity for a maximum of 7.5 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Other Health Care Professionals: A general certificate of attendance will be given to all other health care providers.

Researchers: This seminar will help researchers understand patient impacts and the importance and relevance of research for preventative care and treatments. Fostering collaborative relationships between patients, medical professionals and researchers is a critical goal for the EDS community.

Patient/Family Attendees

Patient and families with Ehlers-Danlos Syndromes and related disorders will increase their understanding of EDS and its potential challenges. They will learn treatment options and get ideas for improving overall quality of life. The increased understanding will help them better navigate care for those impacted by EDS. The lectures are geared for adult patients and pediatric patient family members.

*Children must be twelve or older to attend.

Additional Information:

Tickets: Tickets are only available online and will not be sold at the event. This seminar is expected to sell out so please purchase tickets early.

Registration Time: Registration starts at 7:30 AM and the seminar begins at 8:15 AM. For ease of registration, please bring your ticket.

Nurses, Nurse Practitioners, Physical Therapists, Psychologists, Other Healthcare Providers: Nurses, nurse practitioners and allied health groups (PT, OT, psychologists, etc.) will receive a certificate of attendance with the CME approval statement. Nurses and most allied health groups can self submit to their specific board for credit since this course is approved for 7.5 CME Category 1 credits.

Researchers: PhDs should sign up at the $85 level. PhDs who are also MDs should register as physicians to receive CME.

Agenda and Brochure: A PDF of the registration brochure (includes agenda, CME information, parking details and other information) can be viewed and printed from the EDSKC Collaboration Inc. website at https://www.edskc.org

Attire: Dress is casual.

Age: Children must be 12 years or older to attend. An individual ticket must be purchased for each family member.

Post Event Patient/Family Sessions: Support sessions after the event are optional and expected to last about an hour. If you are a healthcare professional with EDS, please feel free to attend the adult patient session. If you are a heathcare professional with a family member with EDS, please feel free to join the Spouses/Family/Caregiver session.

Special Access: A wheelchair accessible entrance directly into the Pierson Auditorium is located at the back entrance off the large circle drive located West of the Atterbury Student Success Center. Use this entrance to avoid stairs and elevators. Some ADA tables will also be available in Pierson Auditorium.

Food: Box lunches and snacks will be provided. Breakfast is not included. This is a nut free event. No outside food is allowed within the Student Success Center or the Pierson Auditorium. Exceptions will be made for those with extensive dietary restrictions.

Parking: Parking is free for this event and available at two locations. Unless special access is required, please park in the Cherry Street Garage located at 5005 Oak Street. Those needing closer access to the Pierson Auditorium may park in any of the parking lots near the Atterbury Student Success Center. For detailed parking information, please view or print the brochure PDF available at https://www.edskc.org.

Quiet Rooms: Small conference rooms will be available for downtime if needed.

Cancellation: No refunds will be provided for cancellations but you may give someone else your ticket.

Additional Questions? If you have additional questions, please contact us at info@edskc.org.

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Pierson Auditorium, UMKC, Volker Campus

5000 Holmes St

Kansas City, MO 64110

View Map

Refund Policy

No Refunds

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