You are invited to participate in an online survey exploring the experience of symptoms and wellbeing in Joint Hypermobility Conditions and/or Orthostatic Intolerance (e.g., Postural Orthostatic Tachycardia Syndrome; POTS). The survey should take about 30-40 minutes to complete. Your responses to this survey will help us understand the experience of symptoms in these conditions, including better interdisciplinary approaches to its assessment and supportive interventions.

Participation in this study is entirely voluntary. You are not required to participate in or complete these surveys. Your decision whether to take part or not take in this survey will not affect your relationship with any members of the research team.

To be included in this study participants need to be:

• Aged ≥ 16 years.
• Fluent in English language.
• Diagnosed with a joint hypermobility condition and/or have a diagnosis of POTS, or experience orthostatic symptoms without a POTS diagnosis.

Click here to take part.

This research project aims to investigate the diagnostic journey and impact of patients in Australia who have either have a suspected or confirmed diagnosis of Hypermobile Spectrum Disorder (HSD), Hypermobile Ehlers-Danlos Syndrome (hEDS), or Ehlers-Danlos Syndrome (EDS). It will also explore co-diagnoses, quality of life and health system usage and characterise the patient’s experiences with healthcare practitioner interactions during their diagnostic journey.

This study will gather data at a single point in time, utilising a quantitative online 40-50minute survey.

The Patient Diagnostic Journey and Impact survey that has been piloted with both Expert and Patient group.

Participants need to be:

• Over 18 years old.
• Reside in Australia.
• Have a suspected or confirmed diagnosis of Hypermobile Spectrum disorder, hypermobile Ehlers-Danlos Syndrome or Ehlers-Danlos Syndrome.

Click here to take part.

This study aims to understand the connection between relationship factors and key aspects of living with EDS, including:

• Daily functioning and activity levels
• Certainty about your illness
• Your overall wellbeing

By participating, you will help us better understand how relationships can impact the lives of individuals with EDS. We will ask about autistic and attention deficit hyperactivity disorder (ADHD) traits as there is an association between EDS and neurodiversity and is therefore important to include in research. These questions are not intended to be for diagnosis.

You have been invited as a person with EDS (or related joint hypermobility disorder) to help understand how romantic relationships may relate to physical and emotional health. You can take part if you meet the following criteria;

• You are over the age of 18
• You have a diagnosis of EDS (or a related joint hypermobility disorder such as hypermobility spectrum disorder)
• You are currently in a romantic relationship

Click here to take part.

The 2025 National Survey on Health and Disability (NSHD) asks U.S. adults with disabilities to share their experiences with housing, health care, health insurance, transportation, community participation and other aspects of daily life. This is the sixth wave of the NSHD.

Click here to take part.

This study is about childhood experiences, some of which may be difficult. We are planning that this is the first phase of a multi-phase study of the experiences of people with Ehlers-Danlos Syndrome, Complex Regional Pain Syndrome, and/or Postural Orthostatic Tachycardia Syndrome that will continue for up to 5 years or longer.

We are asking you if you want to be in this study because

• You are 18 years of age or older
• You currently live in the United States
• You have Ehlers-Danlos Syndrome (EDS), Complex Regional Pain Syndrome (CRPS), and/or Postural Orthostatic Tachycardia Syndrome (POTS)

You should not be in this study if:

• You live outside the United States; (we plan for Phase 2 to include international participants, so please be patient)
• You are under 18 years of age

Click here to take part.

The primary purpose of this study is to explore how young people with hypermobility associated conditions search social media video platforms for information about lower limb pain and determine which content they like and find useful. The secondary purpose of this study is to look at the content young people watch during their search and explore what features about the videos they like or find useful.

Click here to take part.

The CELIPROLOL Study is a research study evaluating an investigational drug, celiprolol, as a potential treatment for people with vascular Ehlers-Danlos syndrome (vEDS).

Celiprolol is not currently approved for use in vEDS in the United States, and this study is designed to assess its safety and effectiveness in reducing the risk of arterial events.

About the Study:

• Phase 3, placebo-controlled, randomized study
• For individuals with a confirmed COL3A1 mutation
• Investigational drug is taken daily by mouth
• Participation includes regular check-ins and monitoring

Who Can Participate: You may qualify if you:

• Are aged 15 to 75 years
• Have a confirmed genetic diagnosis of vEDS (with a COL3A1 mutation)
• Have had no major arterial events within the past 6 months

Study Goals:

• Evaluate if celiprolol can reduce serious complications (like arterial rupture or dissection)
• Assess the safety and tolerability of celiprolol over time

Learn More or See If You Qualify: discoverceliprolol.com.

Our study examines ocular health in Ehlers-Danlos Syndromes (EDS), focusing on the prevalence of eye symptoms and post-surgical complications. A recent review identified frequent issues in hypermobile EDS, including:

• Xerophthalmia
• Myopia
• Eyelid laxity
• Corneal abnormalities

However, most studies had small sample sizes. Surgical risks are a concern, with the FDA contraindicating LASIK due to complications such as:

• Ectasia
• Poor wound healing
• Refractive unpredictability

A survey of 467 EDS patients suggested higher postoperative complication rates, but larger studies are needed.

Our survey, which will be distributed to EDS clinics and the EDS Society (if accepted), aims to document ocular symptoms and surgical outcomes. It will assess how EDS-related connective tissue fragility affects surgical healing, vision, and overall eye health.

Findings may help:

• Refine surgical guidelines
• Improve patient counseling
• Identify safer interventions for EDS patients considering ocular procedures

Click here to participate.

You are invited to take part in a research study on the relationship between neurodiversity, hypermobility, and fibromyalgia—along with associated comorbidities, mental defeat, and quality of life.
Inclusion criteria for participation:

• 18 years old or over
• Have at least one of the following:
  • Hypermobility (any type)
  • Fibromyalgia
  • A neurodivergent condition (any type)

Click here to participate.

This qualitative research project investigates the lived and embodied experiences of working professionals with chronic illnesses—specifically, how they navigate the challenges of the workplace while managing their health.
Chronic illness can impact many areas of a person’s life, including:

• Physical and emotional well-being
• Professional identity
• Career advancement

Yet, these voices are often left out of discussions about workplace inclusion and accessibility.
Objectives of the study:

1. To understand how professionals navigate disruptions in their career trajectories caused by fluctuating physical health.
2. To explore how chronic illness may disrupt day-to-day workplace practices and interactions.

Participation involves:

• A 60-minute interview via Zoom.

To participate, email: [email protected].

This study investigates brain fog or cognitive difficulties in Ehlers-Danlos Syndrome specifically testing auditory and verbal working memory and attention. This is a follow-up study on a previous IQ battery study. We test EDS patients and controls on 3 tasks testing these abilities as well as surveys measuring commonly used health outcomes and revelant demographic information. This is done to see if particular aspects of pain, fatigue, sleep, dysautonomia or other factors best predict brain fog symptoms.

The survey and tasks are completed independently at home remotely by participants and both sections take 1 hour each to complete. Accomodations are made for breaks as needed by the participants. We require use of PC or Laptop where either speakers or headset are used in a quiet environment as some tasks use audio cues. This study requires the EDS participant to have had doctor-confirmed EDS diagnosis in the past, though no medical records are requested.

Click here to take part.

This qualitative research project investigates the lived and embodied experiences of working professionals with chronic illnesses, specifically how they navigate the challenges and complexities of the workplace while navigating their health issues. Chronic illness can impact several facets of a person’s life, including physical and emotional well-being, professional identity, and career advancement. Despite this, the voices of people living with these illnesses are often overlooked in conversations about workplace inclusion and accessibility.

The specific objectives of this study are:

1. To understand how professionals navigate disruptions in their career trajectories caused by fluctuating physical health.
2. To explore how chronic illness may disrupt day-to-day workplace practices and interactions.

This research will involve 60-minute interviews on Zoom. Please email [email protected] to join.

Parents and children often seek explanations to better understand chronic pain and how to best manage the condition. Explanations received by parents and children regarding chronic pain can either help reduce or increase the pain experience. Health professionals frequently provide pain education to parents and their children to reduce pain and disability as well as establish health attitudes and beliefs about pain.

Currently, it is not well understood what words and/or language are seen as helpful or unhelpful when addressing with chronic lower limb pain. Therefore, the purpose of this survey is to explore what language health professionals, parents of children with chronic lower limb pain and adolescents impacted by chronic lower limb pain find helpful or unhelpful when addressing chronic pain. Participants will be asked to complete a survey identifying and justifying helpful and unhelpful phrases that are/can be used by health professionals when discussing chronic lower limb pain.

Click here to take part.

The purpose of this survey is to investigate the patient perceptions of healthcare specialists’ knowledge of hEDS before they were clinically diagnosed with hEDS.

The study’s findings may lead to a better understanding of which specialists are perceived by patients as having the most and the least knowledge of hEDS. This information could help to identify which specialists commonly seen by individuals with hEDS could benefit from additional education about hEDS, which may help decrease the length of the diagnostic odyssey.

In this survey, knowledge should be ranked based on how much information you feel that the specialist knew about hEDS before you had a diagnosis of hEDS.

Click here to take part.

The purpose of this research is to increase understanding of the relationship between pelvic health knowledge (health literacy) and confidence (self-efficacy) in managing female pelvic dysfunction symptoms in hypermobile Ehlers Danlos syndrome.

As a participant in the study, you will complete a survey that will require about 10 to 15 minutes of your time. Please note that your participation is voluntary, and your information is collected anonymously. Your responses will not be linked to your participation. To participate you must be/have:
• An adult aged 18 years or older
• Female sex at birth (presence of vulva/vagina at birth)
• Diagnosis of hypermobile Ehlers Danlos syndrome (hEDS)
• Symptoms of pelvic health dysfunction (problems with bowel, bladder, or sexual health)

Click here to take part.

Ophthalmic Implications of Marfan and Ehlers-Danlos Syndromes

Very little is known about the impact of EDS on the eyes. A few studies have demonstrated frequent ophthalmic complaints and increased complication rates with ophthalmic surgery, but these studies are limited by a low number of patients. Through this study, researchers at the University of Pennsylvania hope to get a better understanding of the ophthalmic complaints individuals with EDS have. The researchers especially hope to get a better understanding of the retinal problems patients may have; they ask specific questions about retinal problems and provide the option for patients to upload their own, de-identified retinal imaging. Ultimately, they will use this data to highlight issues physicians should focus on when treating individuals with EDS, and perhaps also identify new hypotheses for mechanisms explaining the link between EDS and various ophthalmic symptoms.

Take this survey here, it will take around five minutes of your time.

Illness Perceptions and Illness Perception Incongruence as Predictors of Psychological Distress Among Caregivers in the Context of Chronic Multi-Symptom Illness

Researchers at the University of Albany are looking to gain a better understanding of the experiences of caregivers caring for individuals with conditions characterized by chronic pain, chronic fatigue, chronic irritable bowel, and/or other chronic symptoms. This study is seeking to understand how caregivers think about their care recipient’s chronic multi-symptom illness (CMI), and if caregivers believe they think differently about CMI than their care recipients. This study hopes to understand if caregiver perceptions predict caregiver distress.

This survey will take approximately 20 minutes to complete, click here to take part.

Personal Experiences of the Use of Dynamic Lycra Orthoses to Manage Chronic Pain

The purpose of this study is to collect and analyse the experiences of people with hypermobility (including hEDS and EDS) who have used dynamic lycra orthosis (DLO) to manage their symptoms. This study will mainly be looking at the impact on chronic pain, but the management of other symptoms will also be reviewed.

Click here to take part.