NonprofitsThe Ehlers-Danlos Society

Health Care

The Ehlers-Danlos Society

NEW YORK, NY

Total revenue

$5.0M

Total expenses

$4.5M

Net assets

$7.7M

Grants received

$7.6M

85 grants

EIN

382813140

Tax year

2024

Mission

The ehlers-danlos society is a global orgnization dedicated to advancing and accelerating research and education in ehlers-danlos syndromes (eds) and hypermobilitiy spectrum disporders (hsd). We support the development of effective and equitable eds and hsd therapies and work collavoratively to impove the lives of individuals affected by eds and hsd.

Programs

1 program

The ehlers-danlos society organizes medical and scientific symposiums to examine the latest research and update the diagnostic criteria and guidelines for management and care. We work with the comorbidity coalition and the international consortium on developed clinical care pathways for management and diagnosis. Events for health professionals are held globally and are cme-accredited. Annual global learning conferences bring together and unite our community, providing opportunities to interact, find support, and learn management strategies and information from world-leading experts in eds and hsd.

Expenses: $1.0MGrants: $20K

Financials

FY 2024

Revenue

Contributions & grants$4.4M
Program service revenue$539K
Investment income$566
Other revenue$23K
Total revenue$5.0M

Expenses

Grants paid$1.2M
Salaries & benefits$1.7M
Fundraising$255K
Other expenses$1.7M
Total expenses$4.5M
Total assets$8.2M
Net assets$7.7M

People

16 listed

NameRoleCompensation

ERIC ALLEY

CFO

Board

$86K

40 hrs/wk

WOODROW GANDY

DIRECTOR

Board

1 hrs/wk

SUSAN HASKEL

DIRECTOR

Board

1 hrs/wk

AMY ROCHLIN

DIRECTOR

Board

1 hrs/wk

MICHELLE JALALI

DIRECTOR

Board

1 hrs/wk

CLAIR FRANCOMANO

DIRECTOR

Board

1 hrs/wk

FRANCES FITZGERALD

DIRECTOR

Board

1 hrs/wk

ANOUSHE HUSAIN

DIRECTOR

Board

1 hrs/wk

MELANIE MACLEOD

DIRECTOR

Board

1 hrs/wk

AKILAH CADET

DIRECTOR

Board

1 hrs/wk

WARD FITZGERALD

DIRECTOR

Board

1 hrs/wk

ROBERT RUBIN

TREASURER

Board

5 hrs/wk

JOHN ZONARICH

SECRETARY

Board

5 hrs/wk

SUSAN HAWKINS

PRESIDENT

Board

5 hrs/wk

LARA BLOOM

CEO

Board

50 hrs/wk

AISLING GREEN

DIRECTOR

Board

1 hrs/wk

Independent contractors

METABOLON

ANALYSIS OF BLOOD SAMPLES TO RESEARCH EH

$573K

SOMALOGIC

ANALYSIS OF BLOOD SAMPLES TO RESEARCH EH

$478K

Grants received

Showing 85 of 85

FromAmountPurposeYear
$185K
UNRESTRICTED
2024
$80K
GENERAL SUPPORT
2024
$10K
MEDICAL / PUBLIC SERVICES
2024
$5K
GENERAL SUPPORT
2024
$5K
HEALTH CARE
2024
$3K
GENERAL SUPPORT
2024
$2K
MEDICAL RESEARCH
2024
$120
GENERAL OPERATING PURPOSE
2024
$2.4M
FOR RECIPIENT'S EXEMPT PURPOSE
2023
$315K
UNRESTRICTED
2023
$13K
GENERAL SUPPORT
2023
$13K
HEALTH AND WELLNESS
2023
$12K
PROMOTE AWARENESS OD EDS AND HSD
2023
$11K
GENERAL SUPPORT
2023
$10K
CHARITABLE AID
2023
$9K
For grant recipient's exempt purposes
2023
$7K
RESEARCH & GENERAL SUPPORT
2023
$5K
HEALTH CARE
2023
$4K
Program Support
2023
$2K
CHARITABLE CONTRIBUTION
2023
$2K
MEDICAL RESEARCH
2023
$500
General & Unrestricted
2023
$103
UNRESTRICTED CONTRIBUTION
2023
$50
VOLUNTEER PROGRAM
2023
$50
MATCHING DONATIONS - GENERAL SUPPORT
2023
$201K
UNRESTRICTED
2022
$60K
FOR LEADERSHIP DEVELOPMENT OR TRAINING.
2022
$28K
FOR RECIPIENT'S EXEMPT PURPOSE
2022
$15K
FOR PROVIDING HEALTH SERVICES.
2022
$12K
For grant recipient's exempt purposes
2022
$8K
GENERAL SUPPORT
2022
$6K
HEALTH CARE
2022
$5K
RESEARCH & GENERAL SUPPORT
2022
$1K
RAISE AWARENESS OF EDS AND HSD
2022
$500
General & Unrestricted
2022
$400
MATCHING GIFTS
2022
$25
Contribution Provided
2022
$12
EMPLOYEE MATCHING GIFT DONATION
2022
$184K
UNRESTRICTED
2021
$123K
For recipient's exempt purpose
2021
$15K
FOR PROVIDING HEALTH SERVICES.
2021
$10K
GENERAL SUPPORT
2021
$7K
For grant recipient's exempt purposes
2021
$7K
For grant recipient's exempt purposes
2021
$5K
HEALTH CARE
2021
$3K
Program Support
2021
$300
Medical - Patient support, scientific research, advocacy, and increasing awareness for the Ehlers-Danlos syndromes and hypermobility spectrum disorder.
2021
$291K
FOR RECIPIENT'S EXEMPT PURPOSE
2020
$166K
Unrestricted
2020
$12K
PROMOTE AWARENESS OD EDS AND HSD
2020
$5K
research & GENERAL SUPPORT
2020
$5K
GENERAL SUPPORT
2020
$5K
GENERAL SUPPORT
2020
$5K
GENERAL PURPOSES
2020
$4K
HEALTH CARE
2020
$3K
PROGRAM SUPPORT
2020
$3K
PROGRAM SUPPORT
2020
$1K
SUPPORT STUDIES AND EDUCATION
2020
$100
Medical - saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
2020
$92
EMPLOYEE MATCHING GIFTS
2020
$5K
GENERAL SUPPORT
2019
$500
OPERATING SUPPORT
2019
$141K
Unrestricted
2018
$91K
Unrestricted
2018
$6K
For grant recipient's exempt purposes
2018
$3K
GENERAL SUPPORT
2018
$3K
GENERAL SUPPORT
2018
$170
Matching Grant
2018
$5K
GENERAL SUPPORT
2017

Funded by

$7.6M from 40 funders · 85 grants · 2017–2024

Vanguard Charitable Endowment Program

$2.9M · 4 grants · 2020–2023

Mike & Sofia Segal Foundation

$2.8M · 2 grants · 2023–2024

Network For Good

$1.3M · 7 grants · 2018–2024

American Online Giving Foundation Inc

$187K · 6 grants · 2019–2024

Paypal Charitable Giving Fund

$108K · 3 grants · 2022–2024

Hugh And Charlotte Maclellan Charitable

$90K · 3 grants · 2021–2022

Fidelity Investments Charitable Gift Fund

$41K · 5 grants · 2018–2023

Abramson Family Foundation Inc

$40K · 2 grants · 2023–2024

Details

EIN382813140
NTEE codeE99Z
Subsection03
Ruling date1988-10
Formed1988
Employees6
Volunteers5
THE EHLERS-DANLOS SOCIETY — Mission, Financials & Grants Received | Grantivo