• Aged 14 to 24 years
• Experiencing musculoskeletal pain in one or more regions lasting longer than 3 months and causing significant distress or interference with daily life
• Located in the United States
• Able to read and understand English
• Has access to the internet

This study invites adults who have been diagnosed with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder and who experience persistent hypermobility-related pain to share the factors that influence their participation in physical activity. The questionnaire explores physical, psychological, and social experiences to help inform more inclusive physiotherapy and self-management strategies. The survey is anonymous and will remain open through January 15, 2026. The researcher aims to recruit 5 to 30 participants and will share results once the study is complete.

Click here to take part.

This study invites adults with VEDS and adult caregivers of minors with VEDS to share their experiences with barriers to care that arise during patient and provider interactions. The survey asks about provider trust, perceived provider knowledge, and other factors that may affect access to care. It is anonymous, consent exempt, and takes about 10 to 12 minutes to complete. Participants may choose to enter a separate raffle for one of four $25 Amazon gift cards. Insights from this study may help improve clinical care experiences for individuals with VEDS and their families.

Participants must live in the United States to participate.

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 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 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.

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] or [email protected].

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.

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.