The Ehlers-Danlos Society is inviting people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) worldwide to take part in the 2025 EDS & HSD Community Experience Survey. This survey is designed to gather insights into how EDS and HSD impact daily life, access to care, and healthcare experiences.
Your experience matters—by participating, you can help:
- Reveal key insights about the diagnostic journey
- Highlight challenges and needs within our community
- Inform future discussions about care, research, and resource development
2025 EDS & HSD Community Experience Survey
The Ehlers-Danlos Society is inviting people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) worldwide to take part in the 2025 EDS & HSD Community Experience Survey. This survey is designed to gather insights into how EDS and HSD impact daily life, access to care, and healthcare experiences.
Your experience matters—by participating, you can help:
- Reveal key insights about the diagnostic journey
- Highlight challenges and needs within our community
- Inform future discussions about care, research, and resource development
The Road to 2026
The data from this survey will provide critical insight on the lived experiences of our community on The Road to 2026.
The Road to 2026 is an international effort to update the classification, diagnosis, and management of EDS and HSD. This work will result in the publication of two special issues of the American Journal of Medical Genetics, released in late 2026 and early 2027. Data from the 2025 EDS & HSD Community Experience Survey will be published in late 2026 as part of The Road to 2026 publication.
DICE EDS & HSD Global Registry
Access to the survey is available exclusively through The Ehlers-Danlos Society’s DICE EDS & HSD Global Registry.
The DICE EDS & HSD Global Registry is an important tool for collaborative research. It allows people affected by EDS and HSD to complete surveys and share medical information to assist with research on these conditions.
Who is eligible to participate in this survey?
To participate in the 2025 EDS & HSD Community Experience Survey, you must:
- Be at least 18 years old
- Have a diagnosis of Ehlers-Danlos syndrome or hypermobility spectrum disorder
- Be enrolled in the DICE EDS & HSD Global Registry
How To Participate
Already enrolled in the DICE Global Registry?
Step 1: Check your email inbox for an invitation to participate in the 2025 EDS & HSD Community Experience Survey.
Step 2: Click the invitation link to view the surveys available to you through the DICE Global Registry.
Step 3: Read the study information and participation agreement for the 2025 EDS & HSD Community Experience Survey.
Step 4: If you want to participate, complete the consent and survey.
Not yet enrolled in the DICE Global Registry?
Step 1: Visit our webpage to learn more and sign up to the DICE EDS & HSD Global Registry.
Step 2: Complete the DICE Global Registry Consent.
Step 3: View the surveys available to you through the DICE Global Registry, and complete Survey 1, which must be completed before the other surveys.
Step 4: Read the study information and participation agreement for the 2025 EDS & HSD Community Experience Survey.
Step 5: If you want to participate, complete the 2025 EDS & HSD Community Experience Survey.
Note: If the 2025 EDS & HSD Community Experience Survey does not appear in your survey queue, you do not meet the eligibility criteria to participate based on the information provided. If you believe this is an error, please reach out to the DICE Registry team at [email protected]
FAQs
When will the survey be open?
The 2025 EDS & HSD Community Experience Survey will be open for 5 weeks, May 6, 2025 – June 10, 2025.
What type of information will the survey ask about?
This survey asks questions about your experiences with getting diagnosed, managing your symptoms, accessing care and support, and the personal impact of EDS or HSD, including mental health, relationships, work, school, and finances.
Why do I need to be diagnosed with EDS or HSD to complete the survey?
The 2025 EDS & HSD Community Experience Survey was designed for people who have been diagnosed with a type of EDS or HSD. The survey includes many questions that would not apply to someone who has not been diagnosed, including questions about the diagnostic journey and the impact of having a diagnosis.
We recognize that many people with EDS and HSD are currently undiagnosed. We hope the results of this survey will provide critical insights on the diagnostic journey, including factors that may influence the diagnosis process. We are pleased to offer other survey opportunities within the DICE EDS & HSD Global Registry for all DICE participants, including people who suspect they have EDS or HSD but do not have a diagnosis.
Can someone else complete the survey on my behalf?
Yes, if someone is unable to complete the survey, a friend, family member, or caregiver can complete the survey on their behalf. 
Why do I need to join the DICE EDS & HSD Global Registry to complete the survey?
The DICE EDS & HSD Global Registry provides a secure, individual platform for this survey to be administered to our global community. By including this survey alongside the other DICE surveys, we are developing a database that provides researchers with crucial information about both clinical and lived experiences directly from the EDS and HSD community. We hope that participants of the 2025 EDS & HSD Community Experience Survey will consider participating in the other surveys available to them through the registry.
Is the survey available internationally?
The DICE EDS & HSD Global Registry is available globally and can be accessed via smartphone, tablet, or desktop device.
What languages is this survey available in?
The 2025 EDS & HSD Community Experience Survey is available in English. We are committed to making future surveys through the DICE EDS & HSD Global Registry more accessible and inclusive by offering translated versions. We value the diverse global community we serve and are actively working to improve language access. If you have any questions, please contact us at [email protected].
