Overview and Target AudienceContinuing Medical Education – Friday, March 2, 2018(clinical attendees only)Many medical disciplines encounter patients with Ehlers-Danlos Syndromes (EDS), autonomic dysfunction, and other related disorders. Misunderstandings regarding these conditions are prevalent despite recent advances. The Ehlers-Danlos Syndromes are a group of connective tissue disorders that vary in how they affect the body and in their genetic causes. Patients may present with a variety of complex symptoms and endure significant diagnostic delays. Frequently comorbid conditions include autonomic dysfunction (most often Postural Orthostatic Tachycardia Syndrome), Mast Cell Activation Syndrome, and gastrointestinal disorders. The latest in diagnosis and treatment options for EDS and the related conditions will be presented. The target audience includes primary care providers, specialists, sub-specialists, and allied health professionals. This program includes information for the care of pediatric and adult patients.

Patient-Family Sessions – Saturday, March 3, 2018 Patients and families with Ehlers-Danlos Syndromes, autonomic dysfunction, and related disorders will hear from the same experts on these topics and learn about treatment options and tips for improving quality of life. The lectures are geared for adult patients and pediatric patient family members. A separate teen program will be available during many of the lectures. Pediatric patients must be twelve or older to attend the conference.

Continuing Education ObjectivesUpon completion of this conference, participants should be able to:

• Identify the symptoms and features associated with the different types of Ehlers-Danlos Syndromes (EDS) and explain how to treat, diagnose, or refer accordingly.

• Describe the new classification system for EDS.

• Identify the symptoms of autonomic dysfunction, particularly Postural Orthostatic Tachycardia Syndrome (POTS).

• Identify gastrointestinal complications in patients with EDS.

• Identify features of Mast Cell Activation Syndrome and other immunological complications in patients with EDS .

• Describe current therapy and treatment options for chronic pain and psychological comorbidities in EDS.

• Describe physical therapy modalities available for EDS and POTS.

• Describe current cell-based research efforts in EDS.

Continuing Education CreditFriday, March 2, 2018 (clinical attendees only)Medical: Children’s Hospital Colorado is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Children’s Hospital Colorado designates this live activity for a maximum of 8.25 AMA PRA Category 1 Credit(s) ™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Others: A general certificate of attendance will be given to all other care providers.

Location and ParkingThe conference will be held at Children’s Hospital Colorado on the Anschutz Medical Campus, 13123 E. 16th Avenue in Aurora, Colorado 80045. Please enter through the main hospital entrance and take the glass elevators to the Conference and Education Center on the second floor.

Anschutz Medical Campus employees must park in their designated area. Free parking for conference guests is available on the Lower Level of the Family/Visitor parking structure, just south of the hospital’s main entrance.

For directions, please visit childrenscolorado.org/directions.

AcknowledgmentWe gratefully acknowledge the generous financial support from the Schorr Family Foundation.

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Ehlers-Danlos Syndromes and Associated Conditions: Improving Diagnosis and Treatment for All Ages

March 2-3, 2018Friday, March 2, 2018 – Continuing Medical Education Saturday, March 3, 2018 – Patient and Family Sessions

Children’s Hospital Colorado Anschutz Medical Campus Conference & Education Center 13123 E. 16th Avenue Aurora, CO 80045

Provided byChildren’s Hospital Colorado

Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234.ME_160140601_2017-12

Saturday, March 3, 2018Patient and Family Sessions

8:00 a.m. Registration and Continental Breakfast

8:30 IntroductionEllen Roy Elias, MD

8:45 Ehlers-Danlos Syndrome: Connecting the DotsClair Francomano, MD

9:45 Postural Orthostatic Tachycardia SyndromeJeffrey R. Boris, MD

10:35 Break

10:50 The Growing Roles of EDS and Orthostatic Intolerance in Pediatric GastroenterologyJohn E. Fortunato, MD

11:40 Video: Tackling the Unmet Burden of Ehlers-Danlos and Mast Cell Activation SyndromesAnne Maitland, MD, PhD

12:30 p.m. Box Lunch Provided

1:30 Pain Management in EDSPradeep Chopra, MD

2:30 Research Driven Exercise for the Treatmentof Ehlers-Danlos SyndromeKathryn Proctor, DPT and Christopher Gnip, DPT

3:00 Psychological Comorbidities: Supporting ResilienceSally Tarbell, PhD

3:30 Break

3:45 Exploring Cell-Based Therapies for EDSDennis R. Roop, PhD

4:15 Q&A PanelEllen Roy Elias, MD, Jeffrey R. Boris, MD, Clair Francomano, MD, John E. Fortunato, MD, Pradeep Chopra, MD, Kathryn Proctor, DPT, Christopher Gnip, DPT, Sally Tarbell, PhD and Dennis Roop, PhD

5:00 Adjourn

Registration FeesFriday, March 2, 2018 – Continuing Medical Education (clinical attendees only)

Before 2/16 After 2/16MDs, PhDs, NPs, PAs $135 $160

RNs, PTs, OTs, Other $110 $135

Children’s Hospital Colorado, University of Colorado Hospital, University of Colorado Staff

$85 $110

Residents, Fellows and Students

$85 $110

Saturday, March 3, 2018 – Patient and Family Sessions*Each family member must register separately

Patient/Family Member $25 $25Payment Options: Online credit card payment only.

Cancellation PolicyNo refunds will be granted for non-attendance, although you may send a substitute. The Planning Committee reserves the right to alter the agenda or cancel the conference in the event of an unforeseen circumstance, or if the minimum registration is not attained by February 16th with a full refund to participants.

Further InformationIf you have questions or to request arrangements to accommodate a disability, please contact Alexandria Wilkinson (720) 777-6948 or alexandria.wilkinson@childrenscolorado.org at least three weeks prior to conference.

Faculty

Jeffrey R. Boris, MDClinical Professor of Pediatrics Pediatric Cardiologist Children’s Hospital of Philadelphia

Pradeep Chopra, MDAssistant Professor Brown Medical School Pain Medicine

Ellen Roy Elias, MDProfessor, Pediatrics and Genetics Director, Special Care Clinic Children’s Hospital Colorado

John E. Fortunato, MDProfessor of Pediatrics Northwestern University Feinberg School of Medicine Director, Neurointestinal & Motility Program Ann & Robert H. Lurie Children’s Hospital of Chicago Pediatric Gastroenterology, Hepatology, and Nutrition

Clair Francomano, MDDirector of Adult Genetics and the EDS Center for Clinical Care and Research, Harvey Institute for Human Genetics Greater Baltimore Medical Center

Christopher Gnip, DPTDoctor of Physical Therapy Select Physical Therapy

Anne Maitland, MD, PhDAssistant Professor Department of Medicine - Clinical Immunology Division Mount Sinai Hospital

Kathryn Proctor, DPT Doctor of Physical Therapy North Boulder Physical Therapy Select Medical

Dennis R. Roop, PhDProfessor of Dermatology Charles C. Gates Chair of Regenerative Medicine Director, Charles C. Gates Center for Regenerative Medicine Director, Gates Biomanufacturing Facility University of Colorado Anschutz Medical Campus

Sally Tarbell, PhDProfessor of Psychiatry and Behavioral Sciences Northwestern University Feinberg School of Medicine Neurointestinal & Motility Program Ann & Robert H. Lurie Children’s Hospital of Chicago

RegistrationVisit our website today to

register online at childrenscolorado.org/ce

Be sure to register for the correct date: March 2nd for CME

and March 3rd for patients/families.

Agenda

Friday, March 2, 2018Continuing Medical Education (clinical attendees only)

7:30 a.m. Registration and Continental Breakfast

8:00 Introduction to EDS and Associated ConditionsEllen Roy Elias, MD

8:30 Postural Orthostatic Tachycardia SyndromeJeffrey R. Boris, MD

9:20 The Growing Roles of EDS and Orthostatic Intolerance in Pediatric GastroenterologyJohn E. Fortunato, MD

10:10 Break

10:25 Tackling the Unmet Burden of Ehlers-Danlos Syndrome and Mast Cell Activation SyndromesAnne Maitland, MD, PhD

11:15 Research Driven Exercise for the Treatment of Ehlers-Danlos SyndromeKathryn Proctor, DPT and Christopher Gnip, DPT

11:45 Q&A with Morning SpeakersEllen Roy Elias, MD, Jeffrey R. Boris, MD, John E. Fortunato, MD, Anne Maitland, MD, PhD, Kathryn Proctor, DPT and Chris Gnip, DPT

12:15 p.m. Break to Obtain Lunch *lunch to be eaten during Pediatric Grand Rounds

12:30 Pediatric Grand Rounds: Ehlers-Danlos Syndrome: Connecting the DotsClair Francomano, MD

1:30 Break

1:45 Pain Management in EDS Pradeep Chopra, MD

2:30 Psychological Comorbidities: Supporting ResilienceSally Tarbell, PhD

3:00 Patient Panel

3:30 Break

3:45 Exploring Cell-Based Therapies for EDSDennis R. Roop, PhD

4:15 Q&A with Afternoon SpeakersClair Francomano, MD, Pradeep Chopra, MD, Sally Tarbell, PhD and Dennis R. Roop, PhD

5:00 Evaluation and Adjourn

*An optional teen program will be available during many of the lectures. Pediatric patients must be twelve or older to attend the conference. Teens will have the opportunity to get to know one another in a relaxed setting and participate in structured activities such as a mindfulness exercise, an EDS friendly yoga session, and hear from a panel of college students successfully living with their conditions.

Register online by February 16, 2018 to receive the early registration fee.

You will receive confirmation and other important details via the online registration system.