2026 Ehlers-Danlos/ Hypermobile Spectrum Disorder Research Conference
About this Event
The 2026 Penn State Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Conference, themed “Between the Stripes: Understanding the Comorbidities,” will bring together individuals living with EDS or HSD, caregivers, healthcare professionals, researchers, and advocates to examine the complex health conditions that often occur alongside these connective tissue disorders.
Inspired by the zebra symbol embraced by the EDS and HSD community, the theme recognizes that no two people have identical “stripes.” Symptoms, diagnoses, healthcare experiences, and support needs can look very different from one person to another. Through patient-centered education and multidisciplinary discussion, the conference will help participants better understand how concerns involving the autonomic nervous system, digestive system, pain, fatigue, mast cell activity, neurological health, sleep, and emotional well-being may overlap and influence a person’s overall health.
Ultimately, the conference is about connecting the dots. It will encourage patients and providers to look beyond individual symptoms, strengthen communication across medical specialties, and promote more coordinated, compassionate, and individualized approaches to EDS and HSD care.
Agenda
🕑: 08:00 AM - 08:30 AM
Registration
🕑: 08:30 AM - 08:40 AM
Welcome and Introductions
Host: Rebecca Bascom, MD, MPH
🕑: 08:40 AM - 09:10 AM
Autonomic Dysfunction in EDS/HSD
Host: Alan Pocinki. MD
🕑: 09:10 AM - 09:30 AM
Neuroscience of Pain/Research
Host: Deb McCowan, PT
🕑: 09:30 AM - 09:50 AM
Managing Pelvic Pain in EDS/HSD
Host: Neyha Cherin, MD
🕑: 09:50 AM - 10:10 AM
Pelvic Floor Health
Host: Laura Jacobs, DPT
🕑: 10:10 AM - 10:30 AM
Accommodations for School and Work
Host: Kathleen Zonarisch, PT
🕑: 10:30 AM - 10:50 AM
Break
🕑: 10:50 AM - 11:10 AM
MCAS in the EDS/HSD Patient
Host: Jim Harris, MD
🕑: 11:10 AM - 11:30 AM
Nutrition for the EDS/HSD Population
Host: Srah Monger, RD
🕑: 11:30 AM - 11:50 AM
New Genetics and Biomarkers in EDS
Host: Cortney Gensemer, PhD
🕑: 11:50 AM - 12:10 PM
Speaker Panel
🕑: 12:10 PM - 01:00 PM
Lunch
🕑: 01:00 PM - 01:20 PM
Neurogastroenterology in EDS: Diagnosis and Treatment
Host: Zachary Spiritos, MD
🕑: 01:20 PM - 01:40 PM
Ehlers-Danlos Society Updates
Host: Prof. Lara Bloom
🕑: 01:40 PM - 02:10 PM
Red Flags for Rarer Types of EDS EDS/HSD Biobank: Advancing Research
Host: Clair Francomano, MD
🕑: 02:10 PM - 02:30 PM
Pulmonary Implications in EDS/HSD
Host: Rebecca Bascom, MD
🕑: 02:30 PM - 02:50 PM
Speaker Panel
🕑: 02:50 PM - 03:00 PM
Break
🕑: 03:00 PM - 03:20 PM
Anemia and Bleeding
Host: Peter Cygan, MD
🕑: 03:20 PM - 03:40 PM
Orthopedic Surgical Outcomes and What to Know Before Surgery
Host: Jane Schubart, PhD
🕑: 03:40 PM - 03:50 PM
Functional Measures in EDS
Host: Deb McCowan, PT
🕑: 03:50 PM - 04:10 PM
Pediatrics
Host: Ina Stephens, MD
🕑: 04:10 PM - 04:30 PM
POTS
Host: Amanda Miller, PhD
🕑: 04:30 PM - 04:50 PM
Biomechanics in hEDS, Service Dogs for Dysautonomia
Host: Lebanon Valley College PT Students
🕑: 04:50 PM - 05:00 PM
Speaker Panel
🕑: 05:00 PM - 05:00 PM
Close of Conference
Where is it happening?
Event Location & Nearby Stays:
USD 0.00
