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EDNF 患者支援

支援団体

設立されたEDS支援団体については、以下を参照してください。

これは、EDNFに影響を与えるだろうと選ばれた地方支援団体のリストです。これらの支援団体はEDNFから独立、管理されていて、地元のボランティアによって運営されています。あなたの団体をここに登録（または記載されている情報を変更）するには、団体名、場所、会議や団体の代表を見つける方法を含む一定の情報等の基本情報を、Shani Weber、地方支援団体、福祉団体連絡協議会宛（sasoeds@gmail.com）またはEDNF（ednfstaff@ednf.org）に、送信してください。ありがとうございました。

アリゾナ州

フェニックス

PhoenixEDSは、フェニックス都市圏から州全体をカバーするエーラス・ダンロス症候群の支援団体です。州内の多くの地域に会員がいます。私たちの団体はEDSに罹患したアリゾナ州民で構成されています。私たちは、EDS患者だけでなく、愛する人がEDS患者である人も、同じように歓迎します。私たちは、より広いフェニックス周辺の様々な場所で毎月1、2回の会合を設けています。
私たちはお互いを支援し、会議での情報や経験を共有するためにアクティブなFacebookのページを持っています。会議の日付と場所は、私たちの電子メールリストに追加されることを要求し、私たちのFacebookのページやウェブサイトに掲載されているすべての人に送信されます。
PhoenixEDSへの参加に関心のある方は、Info@PhoenixEDS.orgに電子メールを、またはFacebookページに参加するためのリクエスト（https://www.facebook.com/groups/PhoenixEDS）を歓迎します。Twitterでのフォロー（http://www.twitter.com/PhxEDS）もお願いします。私たちのウェブサイト（http://www.PhoenixEDS.org）も見てください。
あなたが私たちのFacebookのページへの参加をリクエストしたら、あなたの「その他」フォルダの管理者からの個人的なメッセージ（PM）を見てください（または、あなたがページの管理者にPMを送ってもよいです）。

ツーソン

ツーソンEDS支援団体は、毎月、通常、月の最終日または、もう1日、月の最終土曜日に、会合を設けています。彼らのFacebookのページ、ツーソン・エーラス・ダンロス症候群ミートアップ（https://www.facebook.com/groups/384197635077386/）にお問い合わせください。

カリフォルニア州

サンディエゴ

サンディエゴ都市圏の地方支援団体は、毎月第2日曜日の午後1時に、サンディエゴのヘルスセンター通り3075の、クッシュマン・ウェルネスセンター、シャープ記念病院外来別館で、会合を設けています。会合は1階で開催されています。駐車場は、外来別館のすぐ隣のガレージが3ドル、障害者手帳があれば無料で利用可能です。駐車場は、通常、別館への徒歩圏内で、ヘルスセンター通りで見つけることができます。

私たちは、北部の郡に住む人達のためにエンシニータスでのもう1つの会合を計画しています。ある程度の数の出席者が見込まれるまで、日付と時間が変わる場合があります。

私たちの目標は、お互いを支援し、私たちのEDSの知識と経験を共有することです。これらの支援団体の会合は、公開されています。私たちは、家族や友人を歓迎します。私たちは確かに信頼関係を得る十分な共通点を見つけることができますので、また、同様の結合組織障害を持つ人々を歓迎します。Michelle Retta（ehlersdanlossd@gmail.com）まで連絡してください。

**********臨機応変に！強くなれ！************

ロサンゼルス

ゼブラ・グループの詳細については、Donna Acosta（tigermom2@msn.com）に、お問い合わせください。私たちは、お互いを支援し、助け、お互いにEDS情報を共有する、EDS患者の団体です。私たちは、多くの会員と成長したいと考えている、まだ小さなEDS団体です。私たちは、月1回の会合を、ロサンゼルス郊外で、設けています。

北カリフォルニア

北カリフォルニアのボランティアは、堅苦しい会議や管理要件を伴う伝統的な支援団体よりも、慣習に捉われない組織での地方の支援とネットワークを促進することを選択しました。私たちは、オンライン掲示板（Inspire）と2つの異なるFacebookのページ（EDS Support of Northern California）・（EDS Support Group, SF and Northern California）をネットで運営しています。誰でも、出会いを求めるために、日付/時刻を設定することが歓迎されています。最初のステップは、お住まいの地域の場所を特定し、そこの日付/時刻を選択することです。言い換えれば、自宅や職場の近くのコーヒーショップなどです。次に、そこでしばらくの間、インスパイアボード、電子メール、Facebookイベント等を通じて招待状を送って、あなたに会えるように他のユーザーを招待してください。

コロラド州

デンバー

私たちは、正式な支援団体の会合を四半期ごとに設けていて、社会的な、資金調達、特別客員講演者を招いたり等のイベントを、毎月行っています。私たちは、EDSのすべての型、関節の過可動性症候群、他の結合組織疾患によって影響を受けた人たち、彼らの家族・友人を、招待しています。私たちの目的は、お互いに親睦を深め、支援しあうだけでなく、私たちのコミュニティと、医療分野へ、意識と教育をもたらすことです。あなたが、より多くの情報をご希望の場合は、ジャスティンかナンシーにご連絡（edsdenver@gmail.com）ください。私たちは、できるだけ早く返信しますが、24〜48時間かかる可能性があります。

マサチューセッツ州

EDSニューイングランド/マサチューセッツサポートグループはDeveber会議室では、小児病院ボストン - ウォルサム、9ホープアベニュー、ウォルサム、マサチューセッツ州で3時間以上、四半期（3ヶ月毎）日曜満たしています。 駐車場は無料です。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.

Missouri

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.

Oregon

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/. Itfs 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 gotherh 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!

Texas

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

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.

Indiana

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

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.

Rhode Island

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.

New Jersey

Central NJ

The Central New Jersey Ehlers-Danlos Support Group is located between Philadelphia and New York City, and meets once a month around Mercer County, NJ. For more information please contact the co-coordinators via their website.

EDSers United hosts support group meetings once a month at the RWJ Health and Wellness Center in New Brunswick NJ. Visit https://www.edsers.com/nj-community-support-program.html to learn about when our next meeting is taking place.?

Alabama

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.

Maryland

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 listcor you may watch for meeting announcements on EDNFfs 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!

Pennsylvania

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 & friendsc Your tips & suggestions, favorite doctorsf names, and a snack to share (optional)!
Contact: Amanda Yacone, Group Leader eriepa.eds@gmail.com
Washington DC

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!

Michigan

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

Connecticut

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.

Kansas

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.

Virginia

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.

_____________________________________________________________

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!

Tennessee

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

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.

Ohio

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.

Australia

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.

North Carolina

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.

Georgia

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/.

Nebraska

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

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!

South Carolina

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.

Alaska

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.

Hawaii

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.

Washington

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/. Itfs 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 gotherh 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!

Vermont

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.

Canada

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/.

Idaho

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/. Itfs 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 gotherh 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 gJoinh tab and provide your contact information and we will get back to you.

Montana

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/. Itfs 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 gotherh 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!

West Virginia

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!

New Hampshire

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 gEDSersh 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/ .

Iowa

Iowa City

The Ehlers-Danlos Support Group of Iowa City welcomes 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 EDSIowaCity@gmail.com

Kentucky

Louisville

"Our support group welcomes all those living with Ehlers-Danlos in the Kentuckiana area. We have regular meetings where we can share our experiences, information we have learned and together spread awareness. Our Facebook page "Kentuckiana EDS" will have information on meetings and more. Anyone interested in joining our EDS Support Group is welcome to email us at EDS.Kentuckiana@gmail.com and/or request to join our Facebook group."

Illinois

Chicago

The Chicago EDS Support group is a herd of zebras ranging from young to the young at heart. We generally meet the first Saturday of each month from 11 am to 1 pm in Chicago. Past meeting topics include invited guest speakers, programming sessions, and group discussions about living and being diagnosed with EDS. The group and meetings are open to EDSfers, our allies, and those who are just beginning the diagnosis process. To contact the Chicago EDS leadership committee, or for information on our monthly event topic/location, please reach us through our Facebook or MeetUp page.

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