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A Supportive Hug

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:

  1. 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.

  2. 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.

  3. Determine the focus: Some support groups are geared towards specific conditions, while others are more general. Choose a group that aligns with your needs.

  4. 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.

  5. 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

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

Ehlers-Danlos Support Group

Vascular Zebras 

Friends with Vascular Ehlers-Danlos Syndrome

Cervical Spine

EDS Cranio Cervical Syndrome & Related Disorders

EDS Neck Surgery Group

Beyond the Measurement: Chiari/EDS

Bobby Jones Chiari & Syringomyelia Foundation Inspire Community

Hacks

EDS life hacks

EDS life hacks… Tips and tricks for managing EDS

Heart

Aortic Hope

Humor

EDS Laughing Zebras

Loeys-Dietz

Loeys-Dietz Families

Loeys-Dietz Syndrome UK/Ireland/Channel Island Families

Marfans

Marfan Foundation Phone Support Group

Massachusetts Marfan Syndrome Community Group

Marfan Syndrome Forum

The Marfan Support Group

Mast Cell Disorders/MCAS

Mast Cell Northeast Support Group

MCAD & Related Conditions

Small Fiber Neuropathy

Small Nerve 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

EDS PenPals for Kids

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

Maine EDS Support Group

Massachusetts

Boston area EDS and CTD support group

Ehlers Danlos in Boston

Cape Cod Canal South East Mass Ehlers-Danlos Marfan & Related CTDs Support 

Central MA EDS support group

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 

EDSChicago.com 

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