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Home >> Connect >> // Postural Orthostatic Tachycardia Syndrome >> // 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 patient-run local dysautonomia support groups. Please note, this listing is provided for informational purposes only and these groups are not managed by Dysautonomia International, although many of our volunteers are active on these groups. 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 form.

 
Global
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

France
E-mail: tachycardieposturale@yahoo.fr

Germany
POTS (posturales orthostatisches tachykardiesyndrom)
Email: Katie Alba, stop-pots@gmx.de

Ireland
Irish Dysautonomia Awareness

Mexico
Disautonomia Mexico

New Zealand
POTS and Dysautonomia Australia (and surrounds)

United Kingdom
PoTS UK

United States

Arizona
Arizona POTS Alliance
Contact: Crista Procopio

Tuscon POTS Group
Contact: Coppelia Tarantal
Contact Info: http://www.facebook.com/coppeliat

California
California Potsies
Area Served: California
Notes: Group communicates through Facebook. Members plan in person meet ups a few times per year.

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.

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.

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.

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.)

Dysautonomia Network of the Austin/San Antonio/South Central Texas Area
Notes: Group communicates on Facebook and plans occasional meet ups.

Mik's Hidden Hearts Alliance
Teen focused dysautonomia group based in Houston area.

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