Resources and Education Materials

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

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. 

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. 

Scientific research is the backbone of medical discovery, innovation, health infrastructure, and effective health care delivery. Attached is a printable information packet about the impacts of government policy and its recent changes on science and research.

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.

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.

5 Facts about EDS for day 5 of EDS Awareness month.

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

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.

Breaking down research from our very own PhD student, Brian Loizzi. The Norris Lab takes a multidisciplinary approach to studying heart conditions like mitral valve prolapse, plus Ehlers-Danlos Syndrome and related disorders.

Why do heart muscle cells stop dividing after birth, and what tells them to stop? Researchers in The Norris Lab are exploring how nearby support cells might send that signal, and what role the Dchs1 gene plays in the process.This work could shape how we understand heart development and open doors for future repair strategies.

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.

This research translation from our Breaking Down the Research Series highlights the work of MD/PhD candidate Kathryn Byerly (and our team) from the Norris Lab, whose paper was published on May 24 in Cells. The study investigates how the gene Dchs1 shapes heart development.