It is important to note that The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific organizations or groups listed below. Groups listed below are in-person support groups and nonprofit organizations/charities. The Ehlers-Danlos Society does not guarantee or make any warranties, express or implied, as to the quality of advice or support given by any listed group or organization. The information listed in the results is based solely upon the data entered by the groups listed.
The Pain Community
The Pain Community’s (TPC) overarching goal is to improve the overall health, wellbeing, and quality of life of people with pain. We have built a vitural center with resources to build and strengthen an active, energized and diverse community of people affected by pain by providing a foundation of support where education, wellness information and advocacy are promoted.
Dysautonomia Support Network
DSN is a U.S. based, 501 (C) (3) non-profit, organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders. Founded in 2012 as Dysautonomia Divas, the organization now runs over 50 groups online and has chapters in all 50 United States.
We are an all volunteer organization, run by patients for patients! Our volunteer leaders and admins are all trained to help patients through every stage of their journey, from diagnosis to advocacy. We promote a positive but realistic environment and a sense of community in our national and state chapters.
By supporting patients and working with other non-profit organizations, we aspire to increase the scientific understanding of the relationship between dysautonomia, autoimmune disorders, connective tissue disorders and Mast Cell Activation Disorder in the hope of finding new treatment options for patients with these clusters of conditions.
We increase confidence and independence in our members by supplying them the tools, support, education and resources they need to adapt to life with chronic illnesses while challenging themselves to set new goals despite their physical limitations. Toward this end, we provide scholarships for education and grants for service dogs to enable our members to actualize their dreams.
We strive to improve the quality of life of patients worldwide: increasing understanding, awareness and access to appropriate medical care for all patients. We hope to dispel the misunderstanding and prejudice that many medically complex patients face in medical settings and in society as a whole.