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The Ehlers Danlos Society

Organization summary

Type of Nonprofit

Designated as a Organizations for any of the following purposes: religious, educational, charitable, scientific, literary, testing for public safety, fostering national or international amateur sports competition (as long as it doesn't provide athletic facilities or equipment), or the prevention of cruelty to children or animals.

Category: Health - General and Rehabilitative N.E.C. (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$9.76M (2023)

Expenses
$5.19M (2023)

Total Assets
$8.73M (2023)

Total Liabilities
$1.51M (2023)

Source: Form 990 tax filings from 2010 to 2023

Tax Filings by Year

Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.

Fiscal Year Ending Dec.
2023

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$9,764,053
Expenses
$5,185,571
Net Income
$4,578,482
Net Assets
$7,220,258
Notable Sources of Revenue Percent of Total Revenue
Contributions $9,359,005
95.9%
Program Services $395,170
4.0%
Investment Income $543
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $9,334
0.1%
Other Revenue $1
0.0%
Notable Expenses Percent of Total Expenses
Executive Compensation $243,322
4.7%
Professional Fundraising Fees $0
Other Salaries and Wages $968,285
18.7%
Assets/Debt
Total Assets $8,734,113
Total Liabilities $1,513,855
Net Assets $7,220,258
Compensation
Key Employees and Officers Compensation Related Other
Eric Alley (Finance Director) $77,759 $0 $0
Lara Bloom (Ceo) $0 $165,563 $0
Elizabeth Herndon (Director) $0 $0 $0
Melanie Macleod (Director) $0 $0 $0
Edward Fitzgerald Iii (Emeritus Board Member) $0 $0 $0
Woodrow Gandy (Director) $0 $0 $0
Susan Haskel (Director) $0 $0 $0
Amy Rochlin (Director) $0 $0 $0
Mitul Modi (Director) $0 $0 $0
Michelle Jalali (Director) $0 $0 $0
Clair Francomano (Director) $0 $0 $0
Frances Fitzgerald (Director) $0 $0 $0
Anoushe Husain (Director) $0 $0 $0
Aisling Green (Director) $0 $0 $0
Akilah Cadet (Director) $0 $0 $0
Robert Rubin (Treasurer) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Susan Hawkins (President) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$4,514,528
Expenses
$4,085,098
Net Income
$429,430
Net Assets
$2,641,812
Notable Sources of Revenue Percent of Total Revenue
Contributions $3,933,892
87.1%
Program Services $572,083
12.7%
Investment Income $0
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $8,553
0.2%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $228,753
5.6%
Professional Fundraising Fees $0
Other Salaries and Wages $724,877
17.7%
Assets/Debt
Total Assets $3,182,723
Total Liabilities $540,911
Net Assets $2,641,812
Compensation
Key Employees and Officers Compensation Related Other
Eric Alley (Finance Director) $77,523 $0 $0
Lara Bloom (Ceo) $0 $151,230 $0
Elizabeth Herndon (Director) $0 $0 $0
Melanie Macleod (Director) $0 $0 $0
Edward Fitzgerald Iii (Director) $0 $0 $0
Woodrow Gandy (Director) $0 $0 $0
Susan Haskel (Director) $0 $0 $0
Amy Rochlin (Director) $0 $0 $0
Mitul Modi (Director) $0 $0 $0
Michelle Jalali (Director) $0 $0 $0
Clair Francomano (Director) $0 $0 $0
Susan Hawkins (President) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Robert Rubin (Treasurer) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$4,237,967
Expenses
$3,433,295
Net Income
$804,672
Net Assets
$2,207,746
Notable Sources of Revenue Percent of Total Revenue
Contributions $4,066,340
96.0%
Program Services $230,652
5.4%
Investment Income $58
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$63,245
Net Inventory Sales $4,162
0.1%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $231,459
6.7%
Professional Fundraising Fees $0
Other Salaries and Wages $667,763
19.4%
Assets/Debt
Total Assets $2,819,867
Total Liabilities $612,121
Net Assets $2,207,746
Compensation
Key Employees and Officers Compensation Related Other
Eric Alley (Finance Director) $72,150 $0 $0
Lara Bloom (President) $0 $159,309 $0
Elizabeth Herndon (Director) $0 $0 $0
Sandra Chack (Director) $0 $0 $0
Edward Fitzgerald Iii (Director) $0 $0 $0
Woodrow Gandy (Director) $0 $0 $0
Susan Haskel (Director) $0 $0 $0
Philip Hotchkiss (Director) $0 $0 $0
Melanie Macleod (Director) $0 $0 $0
Linda Neumann Potash (Director) $0 $0 $0
Jennifer Tjernagel (Director) $0 $0 $0
Susan Hawkins (Chair) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Rob Rubin (Treasurer) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$2,230,715
Expenses
$1,684,441
Net Income
$546,274
Net Assets
$1,322,772
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,154,718
96.6%
Program Services $86,784
3.9%
Investment Income $110
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $1,494
0.1%
Net Inventory Sales -$12,391
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $82,101
4.9%
Professional Fundraising Fees $0
Other Salaries and Wages $562,432
33.4%
Assets/Debt
Total Assets $2,191,805
Total Liabilities $869,033
Net Assets $1,322,772
Compensation
Key Employees and Officers Compensation Related Other
Rob Rubin (Chief Financial Officer) $61,948 $0 $0
Lara Bloom (President) $18,653 $84,000 $0
Eric Alley (Finance Director) $1,500 $0 $0
Elizabeth Herndon (Director) $0 $0 $0
Sandra Chack (Director) $0 $0 $0
Edward Fitzgerald Iii (Director) $0 $0 $0
Woodrow Gandy (Director) $0 $0 $0
Susan Haskel (Director) $0 $0 $0
Philip Hotchkiss (Director) $0 $0 $0
Melanie Macleod (Director) $0 $0 $0
Linda Neumann Potash (Director) $0 $0 $0
Jennifer Tjernagel (Director) $0 $0 $0
Susan Hawkins (Chair) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Rob Rubin (Treasurer) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,226,502
Expenses
$2,690,698
Net Income
$535,804
Net Assets
$801,117
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,867,045
88.9%
Program Services $352,426
10.9%
Investment Income $132
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $6,899
0.2%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $432,427
16.1%
Assets/Debt
Total Assets $1,407,445
Total Liabilities $606,328
Net Assets $801,117

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,606,827
Expenses
$1,707,982
Net Income
-$101,155
Net Assets
$280,251
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,257,357
78.3%
Program Services $348,286
21.7%
Investment Income $1,412
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$228
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $165,625
9.7%
Assets/Debt
Total Assets $645,814
Total Liabilities $365,563
Net Assets $280,251
Compensation
Key Employees and Officers Compensation Related Other
Linda Neumann Potash (Director) $0 $0 $0
Sandra A Chack (Director) $0 $0 $0
Susan Haskell (Director) $0 $0 $0
Susan Hawkins (Chair) $0 $0 $0
Jane Mitakides (Director) $0 $0 $0
Elizabeth Herndon (Director) $0 $0 $0
Edward Fitzgerald Iii (Director) $0 $0 $0
Woodrow Gandy (Director) $0 $0 $0
Philip Hotchkiss (Director) $0 $0 $0
Lara Bloom (Executive Director) $0 $0 $0
Robert Rubin (Treasurercfo) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Richard Malenfant (Treasurer) $0 $0 $0
A Shane Robinson (Executive Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$952,561
Expenses
$609,119
Net Income
$343,442
Net Assets
$381,406
Notable Sources of Revenue Percent of Total Revenue
Contributions $751,928
78.9%
Program Services $198,472
20.8%
Investment Income $45
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $2,116
0.2%
Notable Expenses Percent of Total Expenses
Executive Compensation $60,200
9.9%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $491,682
Total Liabilities $110,276
Net Assets $381,406
Compensation
Key Employees and Officers Compensation Related Other
Shane Robinson (Executive Director) $60,200 $0 $0
Richard Malenfant (Treasurer) $0 $0 $0
Linda Neumann Postash (Director) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Clair Francomano (Director) $0 $0 $0
Sandra Chack (Chair) $0 $0 $0
Fransiska Malfait (Director) $0 $0 $0
Susan Haskell (Director) $0 $0 $0
Susan Hawkins (Vice Chair) $0 $0 $0
Jakob Rasmussen (Director) $0 $0 $0
Jane Mitakides (Director) $0 $0 $0
Fraser Henderson (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$717,936
Expenses
$763,042
Net Income
-$45,106
Net Assets
$37,964
Notable Sources of Revenue Percent of Total Revenue
Contributions $543,770
75.7%
Program Services $174,139
24.3%
Investment Income $13
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $14
0.0%
Notable Expenses Percent of Total Expenses
Executive Compensation $12,900
1.7%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $246,946
Total Liabilities $208,982
Net Assets $37,964
Compensation
Key Employees and Officers Compensation Related Other
Shane Robinson (Executive Director) $12,900 $0 $0
Peter Cohl (Director) $0 $0 $0
Richard Malenfant (Treasurer) $0 $0 $0
Linda Neumann Postash (Director) $0 $0 $0
John Zonarich (Secretary) $0 $0 $0
Clair Francomano (Director) $0 $0 $0
Sandra Aicken Chack (Chair) $0 $0 $0
Fransiska Malfait (Director) $0 $0 $0
Heidi Collins (Director) $0 $0 $0
Susan Hawkins (Vice Chair) $0 $0 $0
Jakob Rasmussen (Director) $0 $0 $0
Jane Mitakides (Director) $0 $0 $0
Fraser Henderson (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$502,176
Expenses
$606,659
Net Income
-$104,483
Net Assets
$83,563
Notable Sources of Revenue Percent of Total Revenue
Contributions $375,892
74.9%
Program Services $213,044
42.4%
Investment Income $32
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $2,414
0.5%
Net Inventory Sales $0
Other Revenue -$89,206
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $770,027
Total Liabilities $686,464
Net Assets $83,563
Compensation
Key Employees and Officers Compensation Related Other
Peter Cohl (Director) $0 $0 $0
Richard Malenfant Mba Mph (Treasurer) $0 $0 $0
Linda Neumann Postash Rn Mn Cbn (Director) $0 $0 $0
Richard Taffet Mph (Secrectary) $0 $0 $0
Clair Francomano Md (Director) $0 $0 $0
Sandra Aicken Chack (Chair) $0 $0 $0
Fransiska Malfait Md (Director) $0 $0 $0
Shane Robinson (Executive Di) $0 $0 $0
Heidi Collins Md (Director) $0 $0 $0
Susan Hawkins (Vice Chair) $0 $0 $0
John Zonarich Esq (Director) $0 $0 $0
Jakob Rasmussen (Director) $0 $0 $0
Jane Mitakides (Director) $0 $0 $0
Fraser Henderson Md (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$964,115
Expenses
$380,783
Net Income
$583,332
Net Assets
$188,486
Notable Sources of Revenue Percent of Total Revenue
Contributions $818,414
84.9%
Program Services $145,701
15.1%
Investment Income $0
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $1,036,917
Total Liabilities $848,431
Net Assets $188,486
Compensation
Key Employees and Officers Compensation Related Other
Judge Richard Goldenhersh (Director) $0 $0 $0
Richard Malenfant Mba Mph (Treasurer) $0 $0 $0
Linda Neumann Postash Rn Mn Cbn (Director) $0 $0 $0
Richard Taffet Mph (Secrectary) $0 $0 $0
Clair Francomano Md (Director) $0 $0 $0
Janine Sabal (Director) $0 $0 $0
Sandra Aicken Chack (Chair) $0 $0 $0
Deborah Makowski (Director) $0 $0 $0
Shane Robinson (Executive Di) $0 $0 $0
Heidi Collins Md (Director) $0 $0 $0
Susan Hawkins (Vice Chair) $0 $0 $0
John Zonarich Esq (Director) $0 $0 $0
Lara Bloom (Director) $0 $0 $0
Fraser Henderson Sr Md (Director) $0 $0 $0
Jane Mitakides (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$798,085
Expenses
$1,361,206
Net Income
-$563,121
Net Assets
-$394,846
Notable Sources of Revenue Percent of Total Revenue
Contributions $641,473
80.4%
Program Services $156,611
19.6%
Investment Income $1
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $700,862
Total Liabilities $1,095,708
Net Assets -$394,846
Compensation
Key Employees and Officers Compensation Related Other
Elliot Chack (Director) $0 $0 $0
Richard Goldenhersh (Vice Chairpe) $0 $0 $0
Richard Malenfant (Treasurer) $0 $0 $0
Linda Neumann Postash (Director) $0 $0 $0
Richard Taffet (Secrectary) $0 $0 $0
Clair Francomano (Director) $0 $0 $0
Janine Sabal (Director) $0 $0 $0
Sandra Chack (Chair) $0 $0 $0
Deborah Makowski (Director) $0 $0 $0
Shane Robinson (Ceo) $0 $0 $0
Heidi Collins (Director) $0 $0 $0
Susan Hawkins (Director) $0 $0 $0
John Zonarich (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$331,132
Expenses
$258,764
Net Income
$72,368
Net Assets
$168,275
Notable Sources of Revenue Percent of Total Revenue
Contributions $164,756
49.8%
Program Services $162,108
49.0%
Investment Income $6
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $2,413
0.7%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $1,849
0.6%
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $168,451
Total Liabilities $176
Net Assets $168,275

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$289,498
Expenses
$221,233
Net Income
$68,265
Net Assets
$95,907
Notable Sources of Revenue Percent of Total Revenue
Contributions $119,498
41.3%
Program Services $169,002
58.4%
Investment Income $12
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $986
0.3%
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $97,064
Total Liabilities $1,157
Net Assets $95,907

Document Links

Fiscal Year Ending Dec.
2010

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$284,821
Expenses
$289,105
Net Income
-$4,284
Net Assets
$27,642
Notable Sources of Revenue Percent of Total Revenue
Contributions $126,704
44.5%
Program Services $157,571
55.3%
Investment Income $939
0.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$393
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $59,385
20.5%
Assets/Debt
Total Assets $41,114
Total Liabilities $13,472
Net Assets $27,642

Document Links

Fiscal Year Ending Dec.
2009

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2008

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2007

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2006

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2005

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2004

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2003

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2002

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2001

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

About This Data

Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.

The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.

In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.

We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.

Which Organizations Are Here?

Every organization that has been recognized as tax exempt by the IRS has to file Form 990 every year, unless they make less than $200,000 in revenue and have less than $500,000 in assets, in which case they have to file form 990-EZ. Organizations making less than $50,000 don’t have to file either form but do have to let the IRS they’re still in business via a Form 990N "e-Postcard."

Nonprofit Explorer has organizations claiming tax exemption in each of the 27 subsections of the 501(c) section of the tax code, and which have filed a Form 990, Form 990EZ or Form 990PF. Taxable trusts and private foundations that are required to file a form 990PF are also included. Small organizations filing a Form 990N "e-Postcard" are not included in this data.

Types of Nonprofits

There are 27 nonprofit designations based on the numbered subsections of section 501(c) of the tax code. See the list »

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For those interested in acquiring the original data from the source, here’s where our data comes from:

  • Raw filing data. Includes EINs and summary financials as structured data.
  • Exempt Organization profiles. Includes organization names, addresses, etc. You can merge this with the raw filing data using EIN numbers.
  • Form 990 documents. Prior to 2017, these documents were obtained and processed by Public.Resource.org and ProPublica. Bulk PDF downloads since 2017 are available from the IRS.
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  • Audits. PDFs of single or program-specific audits for nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year. Available for fiscal year 2015 and later.

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