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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.

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 https://www.facebook.com/groups/ArizonaEDS/.

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 Terri at edssandiego@cox.net 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.

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 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.

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.

Fort Wayne

Northern Indiana EDS Support Group. Meets in Fort Wayne, IN. Location may vary. For more information email edsnorthernindiana@yahoo.com.

New York City

To learn more about EDS-NYC, contact Kurt Ostergaard at kurt@eds-nyc.com, or visit the website. 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.

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!

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.

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.

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!

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