The Ehlers-Danlos Society Volunteer Program

Please note: We are currently updating our Volunteer Program and are not accepting applications for new volunteers at this time. We will be re-launching this program in the foreseeable future, and any updates will be announced here. Thank you for your interest in volunteering with us!


Why Volunteer with The Ehlers-Danlos Society

There are many reasons an individual might pursue volunteer opportunities. Volunteering is an opportunity to get out in your community—be it your local community, or the EDS and HSD community—and use your talents, passion, and skills, to not only give back and help your community but also connect with more individuals in that community that may someday become good friends.

One of the many benefits of volunteering is that it often challenges you to break out of your comfort zone, which helps you grow as an individual. Volunteering can also give you a sense of reason or purpose. While you are giving back to the community and helping to improve the lives of others, you are improving your life in the process.

Some individuals volunteer because they believe in and want to help further the mission of The Ehlers-Danlos Society, and want to give back to the organization that positively impacted their life. Others choose to volunteer so they can meet people, forge new friendships, and strengthen their support system. Like each zebra’s pattern of stripes is unique, so is every one of our volunteers. Each individual brings their unique skills, talents, and story to tell our community. The more stories we share, the better the picture we can paint of our community, and it strengthens our herd. No matter your reason, we are delighted that you are interested in volunteering with us.

The Program

“The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.

We are proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.”

Our volunteer program is set up to reflect what we see as some of the most important topics in helping to improve the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and other related conditions. Our goal is to provide a vast array of different volunteer opportunities around the world, both online and in-person. Like the stripes of a zebra, all of our stories and experiences with EDS, HSD, and the associated conditions are unique. Because of that, we are offering volunteer opportunities that will fit all abilities, interests, and levels of involvement. Our volunteers are vital to our mission. There are so many things we could not accomplish without our volunteers.

We have volunteer opportunities for volunteers looking to stay on long-term, and opportunities for those that only have a small amount of time to give. We also offer opportunities for specialized volunteers, such as teachers, doctors, nurses, mental health professionals, physical therapists, first responders, music/art therapists, photographers, etc.

All of the volunteer opportunities we have available, both online and in-person, will fall under one of the following areas of interest: advocacy, awareness, research and education, campaigns and events, or Loose Connections. By expanding the way we list our volunteer opportunities—from listing individual jobs to areas of interest—we hope that volunteers will choose an area they are interested in, and perhaps step out of their comfort zone and engage in a volunteer opportunity that, while within their area of interest, is something they have never tried before. This also allows our program to be more dynamic and constantly update as our volunteer opportunities change, as new projects come and go.

Many of the opportunities available in each of those categories will remain permanently, but some positions may change from time to time, depending on current projects or other opportunities that may arise. Listed here are the five categories in which to volunteer. Under each category, you will see a brief description of that category, and a list of examples that show what some of the types of volunteer opportunities that might be offered in that area of interest could be.

Advocacy Volunteers

Advocates are a very integral part of the EDS and HSD community. Those interested in becoming an advocacy volunteer are knowledgeable about EDS, HSD, and associated conditions.  They have a passion for listening, learning, and engaging the public to make positive changes for EDS and HSD.

Some example opportunities that might arise, or skills we’re looking for are:

  • Patient Advocate ECHO/alumni
  • Language volunteers
  • Specialized volunteers that are current or retired mental health professionals
  • Awareness Month Leaders
  • Online moderator for Inspire
  • Online and in-person advocacy campaigns
Awareness Volunteers

Awareness volunteers are individuals that are passionate about raising awareness for EDS, HSD, and associated conditions. They like to think out of the box, and always try to think of new ways to present information and knowledge.

Awareness volunteers are able to enjoy using different mediums to raise awareness and are very creative. These volunteers include those that enjoy writing, are photographers and videographers, and individuals that like creating art in all mediums. Possible volunteer opportunities may include writing, photo, or art prompts to be featured on our social media website. Other potential opportunities are as awareness month leaders, or individuals that are interested in taking charge and helping with awareness month prompts and activities.

Volunteers in this area of interest are individuals that are passionate about raising awareness, enjoy using different mediums to raise awareness, and are creative individuals:

  • Creative volunteers – Writers, Photographers, Videographers, Artists
  • Awareness Month Leaders
  • Think tank group for projects and activities
  • Graphic design
  • Video editing
  • Photography
  • Writing
Campaigns and events volunteers

Volunteers signing up for this area of interest are willing to assist at both in-person events (such as Global Learning Conferences) and online events and campaigns. They are willing to, and are interested in, not only helping to staff and manage events but in working alongside staff and fellow volunteers to create campaigns for the community.

Those with an interest in Development and Fundraising might find satisfaction in volunteering in this area of interest. Awareness volunteers can either be those that enjoy working independently and those that like to work as part of a team.

Volunteers interested in this category of volunteering, are those that will help create and/or manage various campaigns, both online and in-person, are attendees of our Global Learning Conference, or like to think up creative ways to spread EDS and HSD awareness and education:

  • Organize and run online campaigns
  • In-person volunteer at small, local events
  • Global Learning Conference volunteers
  • Think tank to create online and in-person campaigns
  • May Proclamation Challenge Leaders
Loose Connections volunteers

Loose Connections is our recently revived online magazine for original content of all sorts- writing, photography, art, poetry, and more. We are looking for consistent contributors that are willing to work alongside our editor to bring each issue to fruition. We’re looking for everything from writers, artists, and editors, to humorists, reviewers, scouts, and everything in-between. If this is something you’re interested in, we will find a place for you.

Loose Connections started in the 1980s as a mimeographed newsletter, but as the website and social media grew, the mission matured. Loose Connections has been revived in its evolved purpose: a magazine for original content of all sorts, about living with EDS and HSD. Loose Connections is the place to find new creations by people with EDS and HSD, as well as unique pieces about EDS and HSD and how we manage life.

Volunteers involved in this area of interest are individuals that are looking to be regular contributors:

  • Writers
  • Humorists
  • Reviewers
  • Artists
  • Scouts
  • Editors
Research and educations volunteers

Volunteers in this area will be presented with opportunities such as working with Development to help research and write grants, assisting with building our research library, and other research and education-based opportunities. There will be specialized opportunities for EDS ECHO alumni, and those with a background in medicine or science.

Volunteers looking to be involved in this area of interest, are science-minded individuals that love to learn and teach others, are familiar with medical journals and writing, and tend to be independent workers:

  • Grant writing
  • Research or medical background
  • Assisting to build a research library
  • Take minutes for meetings
  • Doctors, nurses, health professionals, etc
  • EDS ECHO alumni

Volunteer Corner – Michelle Murphy

Like far too many in our community, I had been on a very long and very lonely journey to my diagnosis. I was 24 when I graduated from Medical School and felt like I was on the cusp of life. By the age of 26, I was almost bedbound. With each new ailment that was added to my ever-growing list of medical problems, I felt like my life as I knew it was falling apart and nobody could tell me why. After years of countless investigations and misdiagnoses, the puzzle was finally solved after traveling abroad for answers and I was diagnosed with Ehlers-Danlos syndrome.

I volunteered for the first time with the Society at the Global Learning Conference in Nashville, 2019, having attended my first conference in 2018 in Baltimore. I’ll never forget that first conference. I met and was greeted with open arms by so many of the diligent society members and staff. Having been on such a long journey to obtain my diagnosis, to sit in a massive conference hall beside people who finally understood you, was simply overwhelming. For the first time, I felt safe to speak about my experiences and challenges with regard to my condition. I spoke to so many people and listened to so many stories just like my own. I learned there were many common themes among the issues we face as a community. What struck me most, however, was the often silent understanding among members of the community where a look, a pause, or a single tear was intuitively understood with compassion and validation. 

The experience was profound and will stay with me for life. Sitting in the airport before boarding the plane home, I burst into tears. I realized that without the sheer dedication and passion of the Society and its volunteers, I would never have had this experience. Needless to say, I gained so much from the experience personally, that it was important for me to give back in some way to the society and community which helped me in ways they couldn’t begin to imagine. When the opportunity arose to volunteer for the next Global Learning Conference which took place in Nashville, I jumped at the chance.

Volunteering gave me the opportunity to “pay it forward” in my own little way. It allowed me to learn from the best and aspire to do more. It took me out of my comfort zone and helped me grow as a person. It marked a personal turning point for me in accepting my diagnosis and helped me to see opportunities once more. Volunteering gave me hope. I was very proud to wear my volunteer shirt. It was time to give back and this was just the beginning! 

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