The Ehlers-Danlos Society
The Ehlers-Danlos Society
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About this organization
Mission
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, & supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. We support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, & care for the EDS & HSD population. Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. Our strength begins with hope.
About
The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.
Interesting data from their 2020 990 filing
The filing sets forth the mission of the non-profit as “The organization creates resources for those affected by the connective tissue disorder, ehlers-danlos syndrome, by creating and distributing accurate information, providing a network of support and communication, and fostering and funding research.”.
When detailing its responsibilities, they were listed as: “The organization creates resources for those affected by the connective tissue disorder, ehlers-danlos syndrome, by creating and distributing accurate information, providing a network of support and communication, and fostering and funding research.”.
- The state in which the non-profit is legally permitted to operate is MI.
- The number of employees reported by the non-profit on their form as of 2020 is 0.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$101,155.
- The CEO compensation structure within the organization is based on a review and approval from a neutral party.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 16 independent voting members.
- The organization was formed in 1988.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule J.
- The organization is required to file Schedule O.
- The organization pays $179,366 in salary, compensation, and benefits to its employees.
- The organization pays $8,422 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.