Why Volunteer With Us?
Volunteering with The Ehlers-Danlos Society is a meaningful way to engage with your local or global community. By offering your time, skills, and passion, you help improve the lives of individuals living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Through care, access, research, and education, we aim to increase early diagnosis, improve care, and foster global collaboration.
As a volunteer, you contribute to our vision: to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs. Volunteering also allows you to connect with others, grow personally, and make a difference.
Every volunteer brings unique skills and experiences—just like the stripes of a zebra, no two are the same. Together, we can help improve the lives of those affected by EDS and HSD.
Join Our Global Volunteer Community
At The Ehlers-Danlos Society, volunteers are the heart of everything we do. By offering your time, you will receive training, support, and guidance to make a positive impact. We offer a variety of opportunities—online and in-person—to match your skills, interests, and schedule.
From advocacy, awareness, research, education, to events, there’s a role for everyone, no matter your background or expertise.
Join Our Global Volunteer Team Today!
We’d love to hear from you! The Ehlers-Danlos Society welcomes anyone passionate about making a difference for those living with EDS and HSD.
Ready to make a difference? Sign up to volunteer with The Ehlers-Danlos Society today. For more details on the benefits of volunteering and our onboarding process, read our Volunteer Handbook.
​Every role, whether short-term or long-term, is crucial in advancing our mission to provide care, access, research, and education. If no immediate role fits your skills, we’ll keep your information for up to 12 months and reach out when an opportunity arises.
Volunteer Opportunities
Community Research Advisor - Ehlers-Danlos Syndromes
Volunteer Role Description
Position: Community Research Advisor – Rare Types of Ehlers-Danlos Syndromes
Contract: Volunteer
Revised: May 2024
Time Commitment: Two meetings per year, on a weekend, from 9:00 am-5:00 pm. Additionally, four one-hour meetings per year, on weekdays.
Organization Overview
The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in the rare types of Ehlers-Danlos syndromes (EDS). We support the development of effective and equitable therapies for rare types of EDS and work collaboratively to improve the lives of individuals affected by these conditions.
Our vision is to create a world in which each person living with a rare type of Ehlers-Danlos syndrome has the right treatment and care at the right time for their specific needs.
Overview of Responsibilities
We are seeking a highly knowledgeable individual who has lived experience with a rare type of Ehlers-Danlos syndrome to join our Medical and Scientific Board (MASB) review committee as a Community Advisor. As a Community Advisor, you will play a crucial role in providing a lived experience perspective on all topics that are addressed by our MASB that relate to the scientific and medical priorities of The Ehlers-Danlos Society, assessing research proposals related to the rare types of EDS research and initiatives.
Key Responsibilities/Essential Functions
Lived Experience: Utilize your extensive expertise in a rare type of Ehlers-Danlos syndrome to bring insight, feedback, and opinion to all the work covered by this board.
Peer Review: Alongside the other MASB members, conduct comprehensive reviews of research data access applications to our DICE Registry. Provide insightful and constructive feedback on merit, methodology, innovation, and relevance to the rare types of EDS.
Collaborative Assessment: Engage in discussions to share your insights, contribute to decision-making processes, and assist in identifying projects with the greatest potential for advancing knowledge, diagnosis, treatment, or patient care for rare types of EDS.
Maintain Confidentiality: Uphold strict confidentiality regarding research submissions and discussions, ensuring the integrity of the review process.
Adherence to Guidelines: Follow established evaluation criteria and guidelines provided by the committee to ensure fairness, consistency, and adherence to ethical standards.
Qualifications:
- Lived experience with a rare type of EDS
- Knowledge or background in research and healthcare, and involvement in rare type EDS-related projects preferred
Preferred:
- Prior experience serving on review committees, editorial boards, or similar evaluative roles within the medical or scientific community is advantageous
- Strong analytical skills, attention to detail, and the ability to critically evaluate complex scientific proposals
- Excellent communication skills to articulate constructive feedback and engage in collaborative discussions with fellow committee members
Joining our Medical and Scientific Board as a Community Advisor offers a unique opportunity to contribute your expertise toward advancing research on the rare types of EDS and supporting initiatives.
Disclaimers:
- By submitting your application, you acknowledge that your personal information will be stored for up to 12 months, in line with our privacy policy. If a suitable role arises during this time, we will contact you. Your data will not be shared with third parties, and you can request its removal at any time.
- Volunteers under 18 must have written consent from a parent or legal guardian. Not all volunteer roles are available to minors. The Society follows child labor laws and can only accept volunteers under 18 in the UK and the USA.
