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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 sasoeds@gmail.com or EDNF itself at ednfstaff@ednf.org. Thank you.

Pheonix

PhoenixEDS is the Ehlers-Danlos syndrome support group for the Phoenix metro area and throughout the state. We have members in most areas of the state. Our group is made up of Arizonans who are affected by EDS. We welcome those who have EDS as well as those who are affected by having loved ones with EDS. We meet 1-2 times per month in various locations around the greater Phoenix area.
We 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 and website.
Anyone interested in joining PhoenixEDS is welcome to e-mail Info@PhoenixEDS.org and/or request to join our Facebook page at https://www.facebook.com/groups/PhoenixEDS. Follow us on Twitter at http://www.twitter.com/PhxEDS. See our website at http://www.PhoenixEDS.org.
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 send a PM to the page admin).

Tucson

The Tucson EDS support group meets monthly, usually the last or second to last Saturday of the month. Contact the group at their Facebook page, Tucson Ehlers-Danlos Syndrome Meetup: https://www.facebook.com/groups/384197635077386/.

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 ehlersdanlossd@gmail.com for more information.

Los Angeles

To learn more about the Zebra Group, contact Donna Acosta at tigermom2@msn.com. 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.

Denver

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 edsdenver@gmail.com. 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 wsalmgcdjm@aol.com 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 EDSKansasCity@gmail.com.

Salem/Portland

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

Inland Northwest EDS Support

We are an EDS Support group based out of Spokane, WA. We welcome people specifically from Washington, Idaho, Montana, and Oregon! We are happy to accept people both with formal diagnosis or suspected Ehlers Danlos, as well as those who care for a Zebra (parents, spouses, etc). You can find us on Facebook here: https://www.facebook.com/groups/555958577887799/. It’s the best way to stay in the loop!
After applying, you will receive a message from an admin confirming your request to join the group, so make sure to check your “other” folder in your Facebook messages. You will be asked basic information, as we want to keep our group a safe space. We respect that we are all differently abled and may not be able to get to meetings, but while we are based online, we are primarily a place to meet others in your area in person. If you are under 18 and do not feel comfortable disclosing certain information, that is ok, you can be more general. This is a private group, meaning only members can see posts and you must be approved to join the group. We will be hosting regular meetings in the Spokane area and you are all encouraged to attend! We will also be doing awareness activities, and having open discussion. We are NOT medical professionals, and can only give advice from personal experience, so please speak to your health care providers about concerns as well. Please feel free to contact an admin with any questions or concerns at inw.eds@gmail.com or http://www.chronicpainpartners.com/inland-northwest-eds-support-group/! WELCOME to the INW EDS SUPPORT GROUP!

Austin

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 austineds@yahoo.com.

Houston

EDS Texas is a medically oriented Support Group for Texans through online group activity, face-to-face meetings, Good Doctor Lists, tips for better management, and medical research.
EDS Texas holds meetings in the Houston area on a rotational basis - Clear Lake, Katy, The Woodlands and Med Center Inner Loop. Meetings are usually held at a library or community center on an easily accessible highway but may change depending on special speaker or event. Please visit or join: EDS Texas Facebook group (https://www.facebook.com/groups/EDSTexas/) for the Calendar/Meeting Schedule.  You may also email eds.texas@outlook.com to be placed on the email-only group for meeting notifications or if you wish to contact the group organizer.

Dallas

Dallas EDS Support has quarterly meetings with speakers presenting the most current information about EDS. We also have a monthly Newsletter that keeps everyone up-to-date on group activities, upcoming meetings, training opportunities, highlights on medical professionals in the community, and inspirational segments all aimed at helping members develop the tools they need to effectively manage their EDS symptoms and increase EDS Awareness. We also have a Referral Bank where our members have submitted reviews; evaluations of medical professionals they have seen. We invite you to join us! Email Sandra at EDSplus.Dallas.group@gmail.com.

Dallas/Ft. Worth

Contact the Dallas/Ft. Worth Support Group at dfwzebras@gmail.com or visit their website at edsdallas.com. 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.

Ellis County

The Ellis Co. EDS support group meetings in Waxahachie, and it's mission is to educate, empower, and enjoy!  It aims to cater to the people south of Dallas but north of Houston and Austin.  Contact Emily, the group organizer, at EllisCo.EDSzebras@Yahoo.com.

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 EDSOklahoma@gmail.com.

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 admin@okzebras.com and/or request to join our Facebook page.

Norman

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 normanokeds@gmail.com.

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 edsnorthernindiana@yahoo.com and/or request to join our Facebook group.

Michiana

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 michianaednf@gmail.com.

New York City

To learn more about EDS-NYC, contact Kurt Ostergaard at kurt@eds-nyc.com, or visit the website at www.EDS-NYC.com. 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 CNYEDSers@gmail.com and/or request to join our Facebook page.

Long Island

To reach the Long Island support group, contact Vanessa Balter at longislandeds@yahoo.com or visit their website at longislandeds.com.

Warwick

To learn about RI EDS, contact Krista Brack at krista@rieds.org, Diane Weeks at lovey529@cox.net, 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.

Birmingham

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 Alicia.Brightwell@alabamaedsers.org. 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 SASOEDS@gmail.com 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!

Tri-State EDS Support Group (MD, WV, VA) We will meet on the third Thursday of each month from 6-8pm on the campus of WV University Healthcare at the Dorothy McCormack Center Conference room off of exit I-81/exit 14 in Martinsburg, WV (conveniently located between Hagerstown, MD and Winchester, VA). Please find us on Facebook at www.facebook.com/groups/TristateEDS. If you have any questions or concerns you can reach our local leader, Ashton Nesmith-Kochera via e-mail at tristateEDS@gmail.com. We would love to have you join us if you are located Frederick/Hagerstown, MD/Eastern Panhandle, WV/ Winchester, VA areas!

Lancaster

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 lebalori@yahoo.com, or find us on Facebook at the Ehlers Danlos Syndrome Support Group of Central PA.

Pittsburg

The Ehlers-Danlos Syndrome Support Group of the Pittsburgh Area. We are currently meeting in the Aspinwall/Fox Chapel area, on a Saturday afternoon. The Pittsburgh Area group provides information, networking, and support for people with EDS & Connective Tissue Disorders (CTD), their families and friends. For more information please email pgh.eds@gmail.com.

Philadelphia

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 eds.philly@gmail.com, or connect with us on Facebook.

Erie

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.
Location:
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 eriepa.eds@gmail.com
 

DC

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 edsdcmember@gmail.com, 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!

Michiana

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 michianaednf@gmail.com.

Detroit

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 summer vacations, the group will not be meeting in June and July. We will resume regular monthly meetings in August. Please contact Gary Moultrup at gmoultrup@gmail.com with any questions.

Hartland

A ladies support group called, More Than Conquerors, has been started by two sisters. The group is for ladies fighting challenging health conditions such as Lupus, MS, Mixed Connective Tissue Disease, Ehlers-Danlos Syndrome, and more. We are meeting to lift the battle to Jesus Christ through prayer and fellowship. We meet the first Thursday of every month at 7:00 p.m. at Biggby Coffee, 11325 Highland Rd., Hartland, MI 48353. We meet in a private room in the back on the left. Please let me know if you can make it or have any questions!
Contact: Angela at afitzger27@gmail.com
Also, for updates regarding meetings and for discussion please join our group on Facebook group: www.facebook.com/groups/521990001312765?view=info

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 elstager@gmail.com.

Western Connecticut

The Western Connecticut Ehlers-Danlos Syndrome Local Support Group (Western CT EDS) was founded in June 2005. Meetings are held primarily in West Hartford, 2-4 times a year. The meeting format allows members to share about their current status and hear how other members are dealing with similar situations.

Western CT EDS has a strong email presence – with members able to share questions and answers beyond meetings. Having spent 10 years as a community in this area, members are able to share doctor recommendations as well as their experiences dealing with many aspects of living with Ehlers-Danlos Syndrome.

We are always happy to have new members join us, including those affected by EDS as well as their families and friends. To learn more, contact Sandra Buscher at universalm@comcast.net.

Wichita

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 WichitaEDS@gmail.com and/or request to join our Facebook page.

South-Central Virginia

Virginia EDS/Chiari/Syringo/TC/IIH/POTS Support Group.  We are a VA face to face monthly meet and greet, as well as on-line support and resource group.  We are growing and now have six locations as opportunity to meet up with and form friendships during difficult times that tend to isolate us. The goal is to never be alone, to have friendships that develop as life long family. When that occurs that is a successful goal of the group, that has been met. In addition the education and awareness of our illness's is imperative and is available in our files and members life experiences. We offer physician lists and medical professionals that assist us in forming our individual medical team.  The on-line Support is strong, and far reaching. 
This is a support group for you, and is "your" support group.

The six locations for meet and greets:
Fredericksburg 
West End Richmond
Chester/Hopewell
Chesapeake 
Roanoke
Lexington coming in 2016

You can reach us on Facebook as we are a closed group, with responses to requests daily: https://www.facebook.com/groups/195011847266960/.  Screening Is performed, for safety of group.  Also reach us by email at Hyperinchrist@comcast.net.

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 dkdrake.nd@gmail.com.

Richmond

RVA EDS provides support more specific to the Richmond area, but welcomes & has members from many surrounding areas as well. RVA EDS meets in person quarterly (currently Jan/Apr/Jul/Oct) & socially in between. They also have an active Facebook group (https://www.facebook.com/groups/rvaeds) where you will find, in addition to conversation & support, a "Providers We Like" list. You can also find RVA EDS online at rvaeds.org or email them directly at rvaeds@gmail.com.

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Tri-State EDS Support Group (MD, WV, VA) We will meet on the third Thursday of each month from 6-8pm on the campus of WV University Healthcare at the Dorothy McCormack Center Conference room off of exit I-81/exit 14 in Martinsburg, WV (conveniently located between Hagerstown, MD and Winchester, VA). Please find us on Facebook at www.facebook.com/groups/TristateEDS. If you have any questions or concerns you can reach our local leader, Ashton Nesmith-Kochera via e-mail at tristateEDS@gmail.com. We would love to have you join us if you are located Frederick/Hagerstown, MD/Eastern Panhandle, WV/ Winchester, VA areas!

Nashville

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 Kelly Ann Monahan at edsnashville.1704@gmail.com.

Florida

EDS Florida is a group for Florida residents who have or believe they may have EDS as well as medical providers, family, and friends of EDSers. This group is for education, information, and awareness about Ehlers-danlos Syndrome and co-existing disorders such as Mast Cell Activation and Dysautonomia (POTS). Together we can bring awareness to the public and to the medical community one person at a time. Please join us if you live in Florida at: Ehlers-Danlos Syndrome Florida.

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 auerl@bellsouth.net for additional information.

Cleveland

The Cleveland "EDS Support & Friendship Group" has regular monthly meetings, communications, and social activities on the East and West sides.  Our Goals are: INFORMATION, SUPPORT, & AWARENESS.  Please join us!

See meeting details on our website at http://www.chronicpainpartners.com/supportgroups/local-support-groups/ed...  and use the "contact us" button to email our group leader.  Find us on Facebook under the name: Cleveland, Ohio EDS Support Group.

Dayton

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 andreadjulian@gmail.com. You can also find them on Facebook under the name of Dayton Zebras.

Toledo

Our group is made up of people who are affected by Chronic Pain conditions, including Ehlers-Danlos Syndrome, Fibromyalgia, or any Chronic Pain Condition. 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 our group, Serenity Chronic Pain, is welcome to e-mail BPiehl@aol.com and/or request to join our Facebook Page.

Cairns

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 cairns.eds@hotmail.com or sherri.63@hotmail.com.

Charlotte

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: https://carolinasedschiarimorecharlotte.eventbrite.com.

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 cgrampus@gmail.com. For more information about our group and cause, visit our website.

Asheville

The Asheville support group is for patients, family, friends, and caregivers of those with EDS, MCAD/S, POTS, and other comorbid conditions. Meetings are held on the 4th Saturday of the month from 10am - 12pm at the waiting/community room at Mission MyCare Plus in Biltmore Park. Contact ashnceds@gmail.com or visit facebook.com/ashevilleEDS for more information. 

Atlanta

The EDS Support Group of North Atlanta serves all those in Atlanta and Georgia. Find more information at http://www.chronicpainpartners.com/north-atlanta-eds-support-group/.

To learn more about the Nebraska Support Group, contact Kimberley Meisinger at NebraskaEDS@gmail.com or visit their website at http://www.chronicpainpartners.com/nebraska-eds-support-group/. You can also find them on Facebook at http://www.facebook.com/pages/Nebraska-Ehlers-Danlos-Support-Network.

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 LouisianaEDSZebras@gmail.com and/or request to join our Facebook Page at https://www.facebook.com/groups/LouisianaEDSZebras/. We look forward to meeting you soon!

The EDS of South Carolina Support Group is growing and available for anyone with EDS, caregivers or family member(s). Our Facebook group can be found at https://www.facebook.com/groups/edsofsc/. If you need further information about the EDS of SC Support Group, please contact Sharon Albert at EDSofSC@gmail.com.

Anchorage

For information on the Alaska Hope EDS Support Group, contact Cissy Buck at alaskahopeeds@gmail.com or visit the website at www.chronicpainpartners.com/alaska-hope-eds-support-group. Being that Alaska is a big state and has little access to medical teams that are available in the lower 48 states, it is important that a network be built up here. By working together, each of us can play a significant supportive role to one another by providing that gentle hug, doctor recommendation, orthopedic support recommendation, and much more.

EDS Hawaii is a group for Hawaii residents who have or believe they may have EDS as well as medical providers, family, and friends of EDSers. This group is for education, information, and awareness about Ehlers-Danlos Syndrome and co-existing disorders such as Mast Cell Activation and Dysautonomia (POTS). Together we can bring awareness to the public and to the medical community one person at a time. Please join us if you live in Hawaii at: Ehlers-Danlos Syndrome Hawaii.

We are in WA State and support all local hypermobile EDSers and JHSers with formal diagnoses and their local support people. We have a very active closed Facebook group and we meet semi-annually hosted by geneticists for the University of Washington, Drs Byers and Murray. You can ask to join at www.facebook.com/groups/WAEDS and we will screen you in since it is a closed group for security of our members. You can also reach us through emailing ehlersdanlosnw@gmail.com.

Inland Northwest EDS Support

We are an EDS Support group based out of Spokane, WA. We welcome people specifically from Washington, Idaho, Montana, and Oregon! We are happy to accept people both with formal diagnosis or suspected Ehlers Danlos, as well as those who care for a Zebra (parents, spouses, etc). You can find us on Facebook here: https://www.facebook.com/groups/555958577887799/. It’s the best way to stay in the loop!
After applying, you will receive a message from an admin confirming your request to join the group, so make sure to check your “other” folder in your Facebook messages. You will be asked basic information, as we want to keep our group a safe space. We respect that we are all differently abled and may not be able to get to meetings, but while we are based online, we are primarily a place to meet others in your area in person. If you are under 18 and do not feel comfortable disclosing certain information, that is ok, you can be more general. This is a private group, meaning only members can see posts and you must be approved to join the group. We will be hosting regular meetings in the Spokane area and you are all encouraged to attend! We will also be doing awareness activities, and having open discussion. We are NOT medical professionals, and can only give advice from personal experience, so please speak to your health care providers about concerns as well. Please feel free to contact an admin with any questions or concerns at inw.eds@gmail.com or http://www.chronicpainpartners.com/inland-northwest-eds-support-group/! WELCOME to the INW EDS SUPPORT GROUP!

The Ehlers-Danlos Syndrome Vermont group meets to provide support, education and resources to members.  EDS VT meets on the second Saturday of each month from 11 am - 2 pm in the Frymoyer Community Health Resource Center (please bring your own lunch as the coffee shop will be closed).  Vermonters who struggle with EDS, their loved ones and interested healthcare providers are encouraged to join via our Facebook page - Ehlers-Danlos Syndrome Vermont. We look forward to meeting new zebras! Contact us at EDSVermont@gmail.com or join our Facebook group.

Ontario

This group meets in Mississauga and surrounding areas. Anyone who has chronic pain is welcome. Visit our Facebook page at https://www.facebook.com/groups/1638452073085641/.

Inland Northwest EDS Support

We are an EDS Support group based out of Spokane, WA. We welcome people specifically from Washington, Idaho, Montana, and Oregon! We are happy to accept people both with formal diagnosis or suspected Ehlers Danlos, as well as those who care for a Zebra (parents, spouses, etc). You can find us on Facebook here: https://www.facebook.com/groups/555958577887799/. It’s the best way to stay in the loop!
After applying, you will receive a message from an admin confirming your request to join the group, so make sure to check your “other” folder in your Facebook messages. You will be asked basic information, as we want to keep our group a safe space. We respect that we are all differently abled and may not be able to get to meetings, but while we are based online, we are primarily a place to meet others in your area in person. If you are under 18 and do not feel comfortable disclosing certain information, that is ok, you can be more general. This is a private group, meaning only members can see posts and you must be approved to join the group. We will be hosting regular meetings in the Spokane area and you are all encouraged to attend! We will also be doing awareness activities, and having open discussion. We are NOT medical professionals, and can only give advice from personal experience, so please speak to your health care providers about concerns as well. Please feel free to contact an admin with any questions or concerns at inw.eds@gmail.com or http://www.chronicpainpartners.com/inland-northwest-eds-support-group/! WELCOME to the INW EDS SUPPORT GROUP!

Boise

Welcome! We have a new EDS Support Group in Boise ID. Check our Facebook site at https://www.facebook.com/groups/560798613946453/. If you are interested in Joining click the “Join” tab and provide your contact information and we will get back to you.

Inland Northwest EDS Support

We are an EDS Support group based out of Spokane, WA. We welcome people specifically from Washington, Idaho, Montana, and Oregon! We are happy to accept people both with formal diagnosis or suspected Ehlers Danlos, as well as those who care for a Zebra (parents, spouses, etc). You can find us on Facebook here: https://www.facebook.com/groups/555958577887799/. It’s the best way to stay in the loop!
After applying, you will receive a message from an admin confirming your request to join the group, so make sure to check your “other” folder in your Facebook messages. You will be asked basic information, as we want to keep our group a safe space. We respect that we are all differently abled and may not be able to get to meetings, but while we are based online, we are primarily a place to meet others in your area in person. If you are under 18 and do not feel comfortable disclosing certain information, that is ok, you can be more general. This is a private group, meaning only members can see posts and you must be approved to join the group. We will be hosting regular meetings in the Spokane area and you are all encouraged to attend! We will also be doing awareness activities, and having open discussion. We are NOT medical professionals, and can only give advice from personal experience, so please speak to your health care providers about concerns as well. Please feel free to contact an admin with any questions or concerns at inw.eds@gmail.com or http://www.chronicpainpartners.com/inland-northwest-eds-support-group/! WELCOME to the INW EDS SUPPORT GROUP!

Tri-State EDS Support Group (MD, WV, VA) We will meet on the third Thursday of each month from 6-8pm on the campus of WV University Healthcare at the Dorothy McCormack Center Conference room off of exit I-81/exit 14 in Martinsburg, WV (conveniently located between Hagerstown, MD and Winchester, VA). Please find us on Facebook at www.facebook.com/groups/TristateEDS. If you have any questions or concerns you can reach our local leader, Ashton Nesmith-Kochera via e-mail at tristateEDS@gmail.com. We would love to have you join us if you are located Frederick/Hagerstown, MD/Eastern Panhandle, WV/ Winchester, VA areas!

The New Hampshire Ehlers-Danlos Sydrome Support Group was founded, in October 2015, out of the need for support by Annaca Cook. Having EDS can be both physically and mentally exhausting. Together we are stronger and can support one-another in our daily lives.
 
Additionally, we welcome folks from surrounding states such as Massachusetts, Maine and Vermont. We have regular monthly meetings and social get-togethers. We understand that “EDSers” have our good days and our bad days. Even if you cannot attend the meetings regularly, we can still communicate through our web pages, http://www.chronicpainpartners.com/new-hampshire-eds-support-group/about/ , e-mail: EDSNH@hotmail.com and Facebook, https://www.facebook.com/groups/775256785917712/ .
 

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