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 firstname.lastname@example.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 email@example.com . DINET is happy to provide info and materials to give your group a solid start.
Jaqueline Rouin, firstname.lastname@example.org
Name: California Dysautonomia Group
Leader: Emily Block, email@example.com
Name: Los Angeles based Dysautonomia Support Group
Leader: Dr. David Cannon and Emily Caldwell, NP Coordinator
Annual meetings typically held in summer
Name: Maryland Bay Area CFS/Dysautonomia Support Group
Leader: Toni Marshall,410-647-7578, CFSupportfirstname.lastname@example.org
Name: Chronic Sufferers Support Group
Leader: Charles Zellen, email@example.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: firstname.lastname@example.org / (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.
Name: NDRF Support Group, Nevada Chapter
Location: North Carolina
Name: Raleigh Area POTS Support Group
Leader: Mary Fosnaught, email@example.com
Marva Babb, tooBabb@aol.com
Location: North Carolina and surrounding areas.
Name: dysLife Carolinas
Leader: Jessica Kenney, Larsen Jones
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 firstname.lastname@example.org; Vera James email@example.com
Location: Virginia & beyond via email & telecons
Name: NOVA MVPS/Dysautonomia & OI Support Group
Leader:Elly Brosius, MVPS-D_OI_NOVAfirstname.lastname@example.org
Meetings: Second Tuesday of every month, noon eastern, by conference calls.
Email group leader for details.
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.
Email Group: mailto:DysautonomiaDivasandDudesNE@groups.facebook.com