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Support Groups

See below for established EDS Support Groups.

This is a listing of local support groups who have chosen to have a presence here. These support groups are independent of EDNF and are managed and run by local volunteers. To have your group listed here (or to change listed information), please send basic information—name of the group, location and any constant information including a way of finding meetings or group organizers to Shani Weber, Local Groups and Outreach Liaison, at or EDNF itself at Thank you.

ArizonaEDS is our Arizona Ehlers-Danlos syndrome support group. Our group is made up of Arizonans who are affected by EDS: adults, children, teens,women and men. We welcome those who have EDS as well as those who are affected by having loved ones with EDS.

We meet quarterly and have an active Facebook page to support each other and share information and experiences between meetings. Meeting dates and location are sent out to all who request to be added to our e-mail list and are posted on our Facebook page. Anyone interested in joining ArizonaEDS is welcome to e-mail ArizonaEDS@Cox.Net and/or request to join our Facebook page at

If you request to join our Facebook page, please watch your "others" folder for a personal message (PM) from the admin (or you may also proactively send a PM to the page admin). We attempt to keep spam accounts off of our Facebook page, so this email verification is done before accepting most requests simply to confirm that the account is not spam.

San Diego

Local Group of Greater San Diego has meetings on the second Sunday of every month at 1 p.m. at the Cushman Wellness Center, Sharp Memorial Outpatient Pavilion, 3075 Health Center Drive, San Diego. Meetings are held on the first floor. Parking is available at the garage right next to the Outpatient Pavilion for $3 or free with a handicapped card. Parking can usually be found on Health Center Drive with a short walk to the Pavilion.

Our goal is to support each other and share our knowledge and experience with EDS. We also provide education to medical professionals and awareness activities in the community. Everyone is welcome: those diagnosed with EDS or Joint Hypermobility Syndrome, anyone who suspects they have EDS, family, friends and children. Contact Angel Lucas at for more information.

Los Angeles

To learn more about the Zebra Group, contact Donna Acosta at We are a group of EDSers that support and help each other and share EDS info with each other. We are a little EDS family who would love to grow with more members! We have monthly meetings just outside of Los Angeles.

Northern California

The volunteers in Northern California have chosen to encourage local support and networking in a form that is less formal than a traditional support group with rigid meeting and governance requirements. We network through online message boards on Inspire and via two different Facebook Group pages: EDS Support of Northern California and EDS Support Group, SF and Northern California. Any individual is welcome to set up a date/time to meet in person. The first step is to identify a place in your area and pick a date/time you want to be there; i.e., at a coffee shop near your home or work. Then invite others to meet you there for an hour by posting an invitation on the Inspire boards, via email, Facebook event, etc.


We meet quarterly for our formal support group meetings and have monthly events in between including social, fundraising and special guest speakers. We invite those affected by all types of EDS and/or Joint Hypermobility Syndrome, and other connective tissue disorders, including their families and friends. Our purpose is to connect and support each other as well as bring awareness and education into our community and to the medical field. If you would like more information please contact Justin or Nancy at We will get back to you as soon as possible, but it could take up to 24-48 hours.

EDS New England/Massachusetts Support Group meets quarterly (every three months) on Sundays for a minimum of three hours at Children's Hospital Boston-Waltham, 9 Hope Avenue, Waltham, Massachusetts, in the Deveber Conference Room. Parking is free.

Our group is comprised of individuals and families with young children, teens, young adults and parents who are affected by Ehlers-Danlos or a related connective tissue disorder (either personally or as a parent of an affected child). We are committed to supporting one another in every facet of our work, whether it be through our quarterly support meetings/presentations, interim awareness meetings/sessions, ongoing awareness initiatives such as our "EDS Physician Awareness Committee", or through a variety of online communications, over the phone discussions or simply by texting one another. Feel free to contact Jon Rodis at for more information on the group or if you would like to join.

Greater Kansas City

The Ehlers-Danlos Support Group of Greater Kansas City meets every other month on the third Saturday at 3:00 pm at 6608 Raytown Road, Raytown, MO 64133.

We welcome any and all with EDS or other connective tissue disorders as well as the families and friends of those affected. The group offers support to each other through sharing and caring. In addition, we hope to increase the knowledge of EDS within our own lives as well as in the surrounding community. If you would like more information, please contact


Oregon Area Ehlers-Danlos Syndrome Support: for more information, or email The group is also on Twitter @OREDSORG.


The Austin Support Group meets the second Saturday of each month from 10:30am to 12:00pm in room 230 of St. Martin's Lutheran Church, 606 W. 15th Street. You may contact them at


EDS Houston Group meets the third Saturday of each month at the Stella Link Branch Library. For more information about meetings and to contact those involved, join or visit the EDS Houston Facebook open group.


Through our regular monthly meetings, communications, and other activities, our overall guiding principles are to help people with EDS overcome their fears and bewilderment in order to develop the tools and the confidence they need to manage their EDS, and to increase EDS awareness.  Our priorities are: INFORMATION, SUPPORT, & AWARENESS.  We welcome you to join us!  Email Sandra at  

Dallas/Ft. Worth

Contact the Dallas/Ft. Worth Support Group at or visit their website at You can also find them on Facebook. The goal is to have a minimum of 2 meetings per month; one on a weekday and one on a Saturday.  There is not currently a designated meeting spot.  The best way to learn about upcoming meetings is to join the group on Facebook.

Oklahoma City

EDSOK has informal meet-ups once a month in both Tulsa and Oklahoma City, and quarterly meetings to discuss the future and goals of our group. We operate out of our Facebook page. Meeting location and times are announced on the group. For more information, feel free to contact Jessica Eubanks at

Oklahoma City

OKZEBRAS is an Oklahoma based support group with regular meetings in Oklahoma City and McAlester. Our goals as a group are supporting each other, learning different ways to live better with EDS, and educating our local communities. We welcome all EDSers and their caregivers, family, or friends. Anyone interested in joining OKZEBRAS is welcome to e-mail and/or request to join our Facebook page.


The Norman OK EDS Support Group has monthly meetings and social get-togethers. This group is affiliated with the OKZEBRAS online Facebook page.  For more information and location of meetings, you can contact Kate at

Fort Wayne

The Northern Indiana EDS Support Group meets in Fort Wayne, Indiana. You can also find us on our website. We also have a closed group on Facebook to support one another and to share information and experiences between meetings. Anyone interested in joining the Northern Indiana EDS Support Group is welcome to e-mail us at and/or request to join our Facebook group.


Serving northern Indiana and southwestern Michigan. Quarterly meetings are typically held in South Bend or Mishawaka. We also have an EDS awareness booth at the Sunburst Races Expo. For more information or to be put on the mailing list, email

New York City

To learn more about EDS-NYC, contact Kurt Ostergaard at, or visit the website at We hold meetings, usually monthly, frequently with a speaker. Past speakers have included Dr. Jessica Davis, MD, Chief, Division of Genetics at Weill Cornell Medical College, and Dr. Anne Maitland, MD, PhD Allergist Immunologist. We offer a list of recommended doctors on our website and are adding new features to the site to promote activity. We normally hold meetings at the 92nd St. Y on Lexington Ave.

Central New York

CNY EDSers is a support group for people in the Central New York area who are affected by EDS or other disorders of hypermobility. Family members as well as EDSers are welcome. We meet a few times a year, at various locations. We also have a closed group on Facebook to support one another and to share information and experiences between meetings. Meeting dates and location are sent out to all who request to be added to our e-mail list and are posted on our Facebook page. Anyone interested in joining CNY EDSers is welcome to e-mail and/or request to join our Facebook page.

Long Island

To reach the Long Island support group, contact Vanessa Balter at or visit their website at


To learn about RI EDS, contact Krista Brack at, Diane Weeks at, or visit their website. We started meeting in March of 2013 with just a couple members but have over 20 now. We've been doing work with awareness and have created a few EDS information binders for medical practitioners in the state including Dr. Chopra, Mike Healy, and Kevin Muldowny. We have also had members speak at Brown Medical School and with the nurses at the VA about EDS and have connected with EDS Awareness. We meet once a month on different days at the Warwick Public Library.

Central NJ

To learn more about EDSers United: Central New Jersey Ehlers-Danlos Support Group, contact the co-coordinators via their website. This group located between Philadelphia and New York City meets once a month around Mercer County, NJ.


We are a supporting nonprofit for EDNF and Ehlers-Danlos Syndrome. We are based our of Birmingham, AL and have members spanning our state and some from neighboring states as well. We have been an established nonprofit for 1 year and a support group for 1.5 years. You can visit our website here, we are also on Facebook under Alabama EDSers and my email is We have a support group meeting the first Saturday of every month and look forward to what 2014 has in store for us.

The Maryland EDS Support Group meets quarterly with social get-togethers in between. This amazing group of EDSers and those who love us learn how to live better with our condition(s) as we share resources, welcome dynamic speakers, support members, and educate communities. We would love to welcome you and your loved ones join us. Please contact Shani or Heather at for more information or to be added to our email list…or you may watch for meeting announcements on EDNF’s message board.

We are definitely Better Together!


The Ehlers-Danlos Syndrome Support Group of Central PA meets in Lancaster every third Saturday of every month at the Lancaster Wellness Center/Suburban OutPatient Pavilion. For more information, contact Dolores Leba at, or find us on Facebook at the Ehlers Danlos Syndrome Support Group of Central PA.


The Ehlers-Danlos Syndrome Support Group of Greater Philadelphia (EDS Philly) provides networking, information, and support for people with EDS, their families, and their friends. Please join us at our quarterly meetings, e-mail us at, or connect with us on Facebook.


We are glad you are thinking about joining our support group! Here you will find information about the upcoming meetings for the Erie EDS/ CRPS/ Invisible Illness Support Group.
All meetings will be held on the second Wednesday of the month.
UPMC Hamot
201 State Street
Erie, PA 16550
Ground Floor Conference Room G3
Enter on the first floor, and take the elevator to the lower level.
(When exiting the elevator, you will see a sign pointing to the direction of the room – which is to the right of the cafeteria)
Time: 7pm – 8pm
Group Meeting for EDS, CRPS/RSD, POTS, FMS, CTDs, and Chronic Pain
What to bring: Your family & friends… Your tips & suggestions, favorite doctors’ names, and a snack to share (optional)!
Contact: Amanda Yacone, Group Leader


The DC Metro EDS Support Group meets quarterly (March, June, September, and December) at the Tenley-Friendship Library. We welcome anyone with EDS, as well as caregivers and friends. Information about our group can be found on our website.  If you'd like to join our email list, you can email a request to, or add yourself directly here.  Our group features speakers and organizes meeting topics to encourage growth, sharing, and support. We are always looking to see new faces!


Serving northern Indiana and southwestern Michigan. Quarterly meetings are typically held in South Bend or Mishawaka. We also have an EDS awareness booth at the Sunburst Races Expo. For more information or to be put on the mailing list, email


We are officially part of the Marfan Foundation Communities, but we ore open to and encourage participation by anyone impacted by any connective tissue disorder. We meet on the last Sunday of the month at First Presbyterian Church in Royal Oak, MI. Due to the holiday season, our next meeting is Sunday, Jan 25th, from 2:00 - 4:00 pm. Please contact Gary Moultrup at with any questions.

New Milford

Connecticut Zebras is an EDS support group for adults and children who live in CT, NY, and MA. Meetings will take place at the Connecticut Center for CranioSacral Therapy in beautiful, historic New Milford, CT. There is wheelchair accessibility. Exact schedule is yet to be determined, but meetings will most likely occur one Sunday every other month, beginning in July. Education, camaraderie, support, and friendship will be offered.

Historic New Milford is a quintessential New England town. Within walking distance of the meeting place, there are multiple restaurants, 2 hotels and an old-fashioned movie theater, Plus lots of shops! Make a day of it!

For more information, contact Eloise Stager at


Our group is made up of Kansans who are affected by Ehlers-Danlos Syndrome: children, teens, women and men. We welcome those who have EDS, those who have loved ones with EDS, and those still seeking an EDS diagnosis. We meet regularly and have an active Facebook page to support each other and share information and experiences between meetings. Meeting dates are sent out to all who request to be added to our e-mail distribution list and are posted on our Facebook page. Anyone interested in joining WichitaEDS is welcome to e-mail and/or request to join our Facebook page.

South-Central Virginia

The South-Central Virginia Support Group is organized on Facebook with a meeting once a month. The location changes each month. The date, time and place are posted in the events section of the Facebook page. It is a large and active group with many who are very knowledgeable in EDS and related illnesses such as Chiari, Dysautonomia and Mitochondrial disorders. Please join us on Facebook or email Elizabeth at

Hampton Roads

The EDS Hampton Roads Support Group is being established to provide information specific for our area. We are still a very small group so please join us and help us grow. You will find a list of recommended doctors for this area in the File section of the Facebook page.  You can also contact us directly at


The Nashville EDS Support Group welcomes all those living with Ehlers-Danlos syndrome as well as their caregivers. Meetings are held quarterly, with the goal of providing encouragement and support to each other while bringing awareness and education to the community. For more information or to join the Nashville-area group, please send an email to

Northern Florida

The Northern Florida EDS support group is growing. Our goal is to offer support and share resources to those in the North Florida region. We meet occasionally and hope to have presentations on numerous topics in the near future. Join our Facebook page or email Lisa at for additional information.


The Dayton Support Group meets at the Neuro Rehab and Balance Center at Southview Hospital. To learn more about the group, contact Andrea Julian at You can also find them on Facebook under the name of Dayton Zebras.


The Cairns Ehlers-Danlos Support Group meets on the last Saturday of each month at ARC Disability Services, 32 Little Street Cairns. We are a very friendly and supportive group with ages ranging from 3 to 67; most have hypermobile EDS, some with Classical EDS and one member with vascular EDS. Contact the group coordinator, Sherri Hickey, at or


Come talk, listen, and enjoy being around EDS'RS, Chiarians and More..Bring someone with you, bring a pillow, bring anything you'd like to share with the group!  We meet every 2nd Saturday of the month at 1pm-3pm at Julia's Cafe (downstairs orange table and overflow at round table) at 1133 Wendover Rd. Charlotte NC. RSVP here:

Please bring ideas for nutrition (foods, supplements, herbs, and other nutritional alternatives to medications) that helps you through your flares of Chiari, EDS, MCAD, POTS, Dysautonomia, Lupus, IH, TC or related disorders to share with the group...we will have a show and tell. It can be an article, book, expert advice, etc...if you can, bring a handout or provide others where to get information. For further information, call or text Crystal Grampus at 704-449-3517 or email her at For more information about our group and cause, visit our website.


The EDS Support Group of North Atlanta serves all those in Atlanta and Georgia. Find more information at

To learn more about the Nebraska Support Group, contact Kimberley Meisinger at or visit their website at You can also find them on Facebook at

Louisiana EDS Zebras is our Louisiana Ehlers-Danlos syndrome support group. This group is made up of those living in Louisiana who are affected by EDS. This includes adults, children, teens, women, and men. Anyone with EDS or that has a loved one with EDS is welcome in our group. Currently we have an active Facebook group where you can learn and pass on valuable information to others. Meeting dates and locations will be sent out to all who request to be added to our email list and to the Facebook page. If you are interested in joining our Louisiana EDS Zebras group please email Angelle Painter at and/or request to join our Facebook Page at We look forward to meeting you soon!

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