Ehlers-Danlos Society
Meets Standards
Standards For Charity Accountability
Governance
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Board Oversight
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Board Size
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Board Meetings
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Board Compensation
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Conflict of Interest
Measuring Effectiveness
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Effectiveness Policy
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Effectiveness Report
Finances
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Program Expenses
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Fundraising Expenses
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Accumulating Funds
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Audit Report
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Detailed Expense Breakdown
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Accurate Expense Reporting
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Budget Plan
Fundraising & Info
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Truthful Materials
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Annual Report
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Website Disclosures
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Donor Privacy
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Cause Marketing Disclosures
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Complaints
Ehlers-Danlos Society meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to advance and accelerate research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)."
Year, State Incorporated:
1988, MI
Also Known As:
Ehlers-Danlos National Foundation
The Ehlers-Danlos Society (The Society) aims to offer support, guidance, and advice related to Ehlers-Danos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD). The organization's helpline team supports individuals, families, and caregivers worldwide through a telephone helpline and email support. As reported by the charity, medical professionals also use the helpline to seek advice and resources for their patients, accounting for a reported 10-15% of calls. The Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD. The organization also works toward providing learning conferences each year for individuals, families, and caregivers affected by EDS and HSD, and the health providers that care for them. The Society's EDS ECHO program seeks to support health professionals around the world in caring for patients with EDS and HSD. The Society also has a Professional Advisory Network (PAN) comprised of 22 healthcare specialists with expertise in EDS including physicians, geneticists, surgeons, researchers, pediatricians, and therapists.
For the year ended December 31, 2022, Ehlers-Danlos Society's program expenses were:
| Program services | $3,535,053 |
| Total Program Expenses | $3,535,053 |
Chief Executive
Lara Bloom, President and Chief Executive Officer
Compensation*
$151,230
Chair of the Board
Susan Hawkins
Chair's Profession / Business Affiliation
President, Canerector Foundation
Board Size
14
Paid Staff Size
24
*2022 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note: Ms. Bloom is compensated by the Ehlers-Danlos Society, UK, which is a related organization.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Radio
Fundraising costs were 9% of related contributions. (Related contributions, which totaled $4,234,444, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Ehlers-Danlos Society's audited financial statements for the year ended December 31, 2022.
Source of Funds
| Unrealized loss | $-364 |
| Donated services | $5,000 |
| Merchandise sales | $8,553 |
| Grant revenue | $17,094 |
| Conferences | $583,121 |
| Contributions | $4,212,350 |
| Total Income | $4,825,754 |
Programs: 80% Fundraising: 9% Administrative: 11%
| Total Income | $4,825,754 |
| Total expenses: | $4,408,477 |
| Program expenses | $3,535,053 |
| Fundraising expenses | $380,942 |
| Administrative expenses | $492,482 |
| Other expenses | $0 |
| Income in Excess of Expenses | $417,277 |
| Beginning Net Assets | $2,231,718 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $2,648,995 |
| Total Liabilities | $560,386 |
| Total Assets | $3,209,381 |
Note: According to The Socoety's 2022 audited financial statements - consolidated -, the organization received in-kind contributions totaling $5,000 in the form of event product donations.
An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.
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Review in Progress
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Report completed by:
BBB Wise Giving Alliance