• The following is a list of support groups for dysautonomia patients. We provide this list as a referral only.  We cannot endorse the quality of the organizations listed.  Email us at webmaster@dinet.org to add your support group to this list.  

    If you would like to start a support group in your area and would like information and tips to help you get the group started, please contact webmaster@dinet.org .  DINET is happy to provide info and materials to give your group a solid start. 

    Jaqueline Rouin, jaqueline@disautonomia.com


    Name: California Dysautonomia Group
    Leader: Emily Block, eblock@calpoly.edu

    Location: California
    Name: Los Angeles based Dysautonomia Support Group
    Leader: Dr. David Cannon and Emily Caldwell, NP Coordinator
    Contact: ecaldwell@lacard.com
    Annual meetings typically held in summer

    Location: Maryland
    Name: Maryland Bay Area CFS/Dysautonomia Support Group
    Leader: Toni Marshall,410-647-7578, CFSupport-owner@yahoogroups.com

    Location:  Maryland
    Name:  Chronic Sufferers Support Group
    Leader: Charles Zellen, czellen2012@gmail.com, (410) 222-6277
    Meetings:  This group is for people living with Autonomic Dysfunction, Dysautonomia, Vestibular Disorders or Chronic Anxiety issues.  Group will meet every other month at the Odenton Library, 1325 Annapolis Road, Odenton, MD 21113   For more information, email or phone.  Flyer with more information at this link. MarylandSupportGroup_Zellen.docx

    Locatiion: Michigan (Bloomfield Hills)
    Name:      PA for POTS Awareness
    Leader:    Megan Scholl
    Email:      paforpotsawareness@gmail.com / (248) 255-5274
    Meetings:We are an informal group (come comfy!) that meets about every 6 weeks to share information and support. We like to have local doctors from many different specialties join us for both their learning and ours. 

    Location: Nevada
    Name: NDRF Support Group, Nevada Chapter
    Leader: sglevy@ndrf.org

    Location: North Carolina
    Name: Raleigh Area POTS Support Group
    Leader: Mary Fosnaught, marynhans@aol.com
    Marva Babb, tooBabb@aol.com

    Location: North Carolina and surrounding areas.
    Name: dysLife Carolinas
    Leader: Jessica Kenney, Larsen Jones
    Website: https://www.facebook.com/groups/371932662940208
    Email: dysLifeCarolinas@gmail.com
    Meetings: dysLife Carolinas is a multi-chapter integrated support group for people in North Carolina and the surrounding areas living with Dysautonomia and related conditions. We currently have face-to-face Meetups in Asheville, Charlotte, Greensboro, Raleigh-Durham, Wilmington and Winston-Salem. Email group leaders or request to join Facebook group for details.

    Location: United States
    Name: The Multiple System Atrophy Coalition
    Leader: Judy Biedenharn jbiedenharn@msacoalition.org; Vera James vjames@msacoalition.org
    Website: http://www.multiple-system-atrophy.org

    Location: Virginia & beyond via email & telecons
    Name: NOVA MVPS/Dysautonomia & OI Support Group
    Leader:Elly Brosius, MVPS-D_OI_NOVA-owner@yahoogroups.com
    Meetings: Second Tuesday of every month, noon eastern, by conference calls.
    Email group leader for details.
    Website: http://www.cfsnova.com/mvpsoi.html
    Email Group: http://health.groups.yahoo.com/group/MVPS-d_oi_nova/

    Location: Southern New England
    Name: Dysautonomia Divas, Dudes & Zebras of New England
    Leader:Amanda Ailulola, LPN,
    Meetings: Our Southern New England chapter meets on the MA and RI state line at Cardi's Furniture Community Room for regular chapter meetings. Free transportation from the MBTA Attleboro station is available, call (401) 573-2621 to schedule pickup. Cardi's is located directly off of exit 1 on I-95. There is plenty of free and handicap parking. The building is wheelchair accessible and has elevators located in the front and back of the building. Email group leader or call for details.
    Website: https://www.facebook.com/groups/DysautonomiaDivasandDudesNE/
    Email Group: mailto:DysautonomiaDivasandDudesNE@groups.facebook.com