Support Groups
Selecting a chronic illness support group is an important decision, and it's essential to choose a group that's a good fit for your needs. Here are some tips to help you select a support group:
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Research your options: Look for support groups in your area, and research them online. You can also ask your healthcare provider or other trusted sources for recommendations.
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Consider the format: Some support groups meet in person, while others are held online. Decide which format is best for you based on your preferences and needs.
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Determine the focus: Some support groups are geared towards specific conditions, while others are more general. Choose a group that aligns with your needs.
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Evaluate the facilitator: The facilitator plays a crucial role in the success of the group. Look for a facilitator who is knowledgeable, empathetic, and respectful.
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Attend a meeting: Attend a meeting or two to get a feel for the group and its members. Ask questions and determine if the group is a good fit for you.
Remember that support groups can be an excellent source of comfort, education, and resources. Take your time and choose a group that will meet your needs and help you on your journey.
Support Groups
Caregivers
Significant Others of EDS/Marfans Support Group
Vascular Ehlers Danlos Caregivers Support
Dysautonomia
Dysautonomia International: MA
Dysautonomia; All We Know So Far
Ehlers-Danlos
EDS Crafts, Activities, and Hobbies
Ehlers-Danlos Early Diagnostics
Ehlers Danlos Initiatives, Surveys, and Unified Voices
Friends with Vascular Ehlers-Danlos Syndrome
Cervical Spine
EDS Cranio Cervical Syndrome & Related Disorders
Beyond the Measurement: Chiari/EDS
Bobby Jones Chiari & Syringomyelia Foundation Inspire Community
Hacks
EDS life hacks… Tips and tricks for managing EDS
Heart
Humor
Loeys-Dietz
Loeys-Dietz Syndrome UK/Ireland/Channel Island Families
Marfans
Marfan Foundation Phone Support Group
Massachusetts Marfan Syndrome Community Group
Mast Cell Disorders/MCAS
Mast Cell Northeast Support Group
Small Fiber Neuropathy
By Age Group
Pediatric
Ehlers-Danlos Syndrome Pediatrics Support Group
Parents of Children with Ehlers-Danlos and Hypermobility Syndrome
Parents of Kids with Marfan’s, EDS, and Related CTDs
Teens
Teens with Marfans, EDS, and related CTDs
Adults
Adults in their 20s/30s with Marfans, EDS, and Related CTDs
Ehlers Danlos and CTD Zebras over 40
By Location
New England
Ehlers-Danlos, Marfan and Related CTDS New England/MA Support Group -this is the official Facebook home of this group
Connecticut
CT Zebras Ehlers Danlos and CTD Support Group
Maine
Maine Ehlers Danlos Support Group
Massachusetts
Boston area EDS and CTD support group
Cape Cod Canal South East Mass Ehlers-Danlos Marfan & Related CTDs Support
Ehlers Danlos Syndrome EasternMass Support
North Shore Ehlers-Danlos syndromes & related CTDs Support group
Western MA EDS and CTD support group
Rhode Island
RI EDS awareness support group
Vermont
Ehlers Danlos Syndromes Vermont
Illinois
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