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Home >> Postural Orthostatic Tachycardia Syndrome >> // Connect >> // Neurocardiogenic Syncope (NCS) >> // Pure Autonomic Failure >> // Syncope/Neurally Mediated Syncope >> Find a Support Group

Find a Support Group



We know how valuable it can be for patients and caregivers to connect with others in their own community who are facing similar challenges. That is why we have compiled the following list of existing patient run local dysautonomia support groups.

In addition to the list below, you can use our Interactive Global Dysautonomia Map to look for the support group closest to your home and individual patients who may live in your area. We encourage you to add yourself to the map, so that other patient's can find you, and so that the public can see how common dysautonomia really is.

If you know of any other local/regional dysautonomia related support groups that are not on our list or our map, please let us know about them by filling out this simple form.

Also, if you search through our list and can't find a support group in your area, consider starting one. All it takes is one individual willing to be the main contact person, and sooner or later, you will find others in your region who want to connect. That is how almost all of these support groups were started. Don't forget to let us know if you have started a new support group.

 
Global
The Dysautonomia Connection runs a Facebook based support group for patients with all forms of dysautonomia. The Dysautonomia Connection was founded by Dysautonomia International Patient Advisory Board Member David Metz with other patients.

POTS is the largest Facebook group for POTS patients. It was founded by Dysautonomia Internaional Board Member Jodi Epstein Rhum.

DINET provides a moderated web based forum for dysautonomia patients.

Australia
POTS and Dysautonomia Australia

Ireland
Irish Dysautonomia Awareness

France
E-mail: tachycardieposturale@yahoo.fr

Mexico
Disautonomia Mexico

New Zealand
POTS and Dysautonomia Australia (and surrounds)

United Kingdom
PoTS UK
UK POTSies

United States

National MSA Support Group & Local Chapters

Arizona
Tuscon POTS Group
Area Served: Tuscon and surrounding areas
Contact: Coppelia Tarantal
Contact Info: http://www.facebook.com/coppeliat
Notes: Group is web based and has social gatherings several times per year.

California
California Potsies
Area Served: California
Notes: Group communicates through Facebook. Members occassionally plan in person meet ups.

Connecticut
NY POTSies
Area Served: NYC metro area & surrounding suburbs (Long Island, Westchester, Rockland, Putman and Orange counties, northern NJ, western CT)
Contact Name: Lauren Stiles
E-mail: lstiles@dysautonomiainternational.org
Notes: Group is based on Facebook. Group is private so you cannot find it on a search of Facebook. Members meet informally/socially a few times per year. Open to any POTS, NCS, OI patients in the area.

New Jersey
NY POTSies
Area Served: NYC metro area & surrounding suburbs (Long Island, Westchester, Rockland, Putman and Orange counties, northern NJ, western CT)
E-mail: lstiles@dysautonomiainternational.org
Notes: Group is based on Facebook. Group is private so you cannot find it on a search of Facebook. Members meet informally/socially a few times per year. Open to any POTS, NCS, OI patients in the area.

New York
NY POTSies
Area Served: NYC metro area & surrounding suburbs (Long Island, Westchester, Rockland, Putman and Orange counties, northern NJ, western CT)
Contact Name: Lauren Stiles
E-mail: lstiles@dysautonomiainternational.org
Notes: Group is based on Facebook. Group is private so you cannot find it on a search of Facebook. Members meet informally/socially a few times per year. Open to any POTS, NCS, OI patients in the area.

Buffalo Area Dysautonomia Support Group
Area Served: Buffalo and surrounding communities
Contact Name: Dr. Svetlana Blitshteyn
Contact Info: http://drblitshteyn.com

Rhode Island
Dysautonomia Divas

Texas
Texas Association for Dysautonomia Awareness (T.A.D.A.)
Area Served: Texas and surrounding areas
Notes: Group meet regularly and has speakers from the medical community give presentations and seminars.

Dysautonomia Network of the Austin/San Antonio/South Central Texas Area
Contact Name: Soraya Ramhormaz
Contact Info: You can find Soraya on the Facebook group
Area Surved: Austin, San Antonio, South-Central Texas
Notes: Group communicates on Facebook and plans occassional meet ups.

MORE TO BE ADDED SOON!

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