Resources and Education Materials

A systematic review published in Clinical Genetics mapped the location of vascular aneurysms across all EDS subtypes, covering 58 years of medical literature. While vEDS carries the greatest risk, vascular complications have been documented across multiple EDS subtypes.

In honor of autism acceptance month, here’s the latest clinical research on the intersections between autism and EDS/HSD.

A document outlining the long and complicated history of how the Ehlers-Danlos Syndromes have been named and classified. Throughout history, cultural beliefs and medical norms have shaped the politics of nosology. Each year, the field grows and pushes toward better diagnosis, deeper biological understanding, improved care, and clearer classification. We are excited to continue working on these conditions and for the implications of better diagnostics and care for patients.

At the Norris Lab, patients are not just participants—they’re pioneers. In light of this being the first week of our hypermobile EDS Internship Program, let’s talk about patient-science! Integrating patient perspectives, especially in EDS research, leads to more relevant, compassionate, and transformative science.

A flyer introducing the Norris Lab and its mission, emphasizing our commitment to patient-led science and translational research aimed at improving lives while investigating the root causes of EDS and related conditions.

Tethered cord syndrome (TCS) is a spinal condition where the cord is abnormally anchored, sometimes without visible signs on imaging. Symptoms may include lower back pain, leg weakness, bladder issues, and more; and in occult cases, standard imaging may appear normal.

Cervical instability is a common yet often overlooked complication in people with hypermobile Ehlers-Danlos syndrome (hEDS) that can affect multiple levels of the cervical spine. This includes the cranio-cervical junction (CCI), the atlantoaxial joint (AAI), and the lower cervical spine (CI). The instability typically develops from ligament laxity or injury, and may occur alongside tethered cord syndrome or Chiari malformation.

Ehlers-Danlos syndrome isn’t one diagnosis. There are 14 distinct subtypes and clinical manifestations, each with its own genetic causes and diagnostic criteria. This series walks through the major and minor clinical criteria for each subtype as defined by the 2017 International EDS Classification, plus the genes involved and how the criteria combine to suggest a diagnosis.

Breaking down the scientific methods of two studies and their results in bite-sized form:
- KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome
- Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis (Pre-print)

This study explores a theory called the epithelial barrier hypothesis and its relation to hyper-mobility disorders like hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder.

This research translation from our Breaking Down the Research Series highlights one of our recent publications, KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome, published in iScience in September 2025.

A printable education material; New release by Dr. Joseph Eichinger in collaboration with The Norris Lab, titled "Orthopaedic Manifestations in Hypermobile EDS". This large-scale study reveals a median involvement in 11/16 joints, superior outcomes with hEDS‐specific physical therapy, and notable surgical complication rates. This underscores the need for tailored care pathways.

Part of a science communication series designed to translate our Ehlers-Danlos Syndrome and cardiac research into clear, accessible insights for the community. This study, led by PhD candidate Taylor Petrucci in the Norris Lab, explores phenotypic clusters and multimorbidity in over 2,000 individuals with hEDS. We’re committed to making research relevant and directly impactful to the community, connecting evidence to the everyday experiences of the people it’s meant to serve

Defining the clinical scope of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) is essential for improving patient prognosis and guiding effective disease management. Affected individuals face substantial care burdens and stressors, compounded by the multisystemic nature of the disease and the persistence of chronic pain. Below is a research translation of the global survey study made to explain our research process and findings

A printable education material; a basic introduction into Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, and their clinical manifestations.

A printable pamphlet for dance and gymnast instructors on the signs and symptoms of Ehlers-Danlos syndromes and hypermobility spectrum disorders, so affected students can be recognized earlier and supported sooner. Beyond prompting medical evaluation, recognition can lead to gym accommodations, prevent pain or fatigue from being mistaken for laziness or deconditioning, prevent further injury, and ease the social burden on students.

A printable pamphlet for middle school staff, teachers, nurses, and aides, on the signs and symptoms of Ehlers-Danlos syndromes and hypermobility spectrum disorders, so affected students can be recognized earlier and supported sooner. Beyond prompting medical evaluation, recognition can lead to classroom accommodations, prevent pain or fatigue from being mistaken for behavioral issues, support 504/IEP processes, and ease the social burden on students.

A printable provider education material; a pamphlet outlining the clinical phenotypes of hEDS, the current diagnostic guidelines, best practices for caring for complex patients according to physicians and researchers, common misconceptions, epidemiological trends, and publications to reference.