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Ehlers-Danlos Society

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 382813140 ✦ New york, NY ✦ Designated as a 501(c)(3)

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Overview

What is Ehlers-Danlos Society?

The Ehlers-Danlos Society is a global organization based in New York, dedicated to advancing and accelerating research and education in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). They bring together medical professionals worldwide to work on groundbreaking management and care, with a focus on the Global EDS and HSD Registry. This registry serves as a new research opportunity, enabling the identification of links between EDS and HSD and other conditions. The society awards funding for research grants in Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, aiming to ensure consistent and groundbreaking research globally to help individuals living with these conditions. Their mission includes global learning conferences, collaborative research, education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.


Official website here: www.ehlers-danlos.com

What are the reviews and ratings of this charity?

Charity Navigator Rating: 95%

The Ehlers-Danlos Society has earned a Four-Star out of Four Star rating from Charity Navigator, reflecting its strong commitment to accountability and financial health. With a remarkable score of 100 in leadership and adaptability, the organization demonstrates effective governance and a transparent operational structure. Its independent board and rigorous financial practices ensure that donors can trust their contributions are well-managed and directed towards impactful initiatives.

User feedback highlights the Society's significant role in addressing the challenges faced by those with Ehlers-Danlos Syndrome (EDS). Many individuals report feeling less isolated and more educated about their condition due to the Society's support programs, conferences, and community-building efforts. Clients and professionals alike praise the organization for its dedication to advancing research, raising awareness, and improving the diagnosis journey for patients, often noting that the Society has provided invaluable resources and networking opportunities.

While the Society is widely recognized for its positive impact, there are occasional mentions of past controversies regarding management practices. However, the overwhelming majority of user reviews reflect a deep appreciation for the comprehensive support and advocacy provided by the organization, portraying it as an essential resource for the EDS and Hypermobility Spectrum Disorder communities.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

Is Ehlers-Danlos Society legitimate?

Ehlers-Danlos Society is a legitimate nonprofit organization registered as a 501(c)(3) entity. Ehlers-Danlos Society submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $228,753
Professional Fundraising Fees: $0
Other Salaries and Wages: $724,877

For more financial information, click here


Official website here: www.ehlers-danlos.com

What is the mission statement of Ehlers-Danlos Society?

The Ehlers-Danlos Society is committed to driving research and education in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). Their goal is to accelerate the development of effective and equitable therapies for these conditions. They achieve this by organizing global learning conferences, collaborative research, education initiatives, awareness campaigns, advocacy, community-building, and providing care for individuals affected by EDS and HSD. The organization is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to improving and saving lives of those affected by EDS, HSD, and related conditions.


Official website here: www.ehlers-danlos.com

Who is the CEO of Ehlers-Danlos Society?

Lara Bloom is the Ceo of Ehlers-Danlos Society. The CEO's salary of Ehlers-Danlos Society is $0 and their total compensation is $151,230.


Official website here: www.ehlers-danlos.com

What is the revenue of Ehlers-Danlos Society?

Ehlers-Danlos Society's revenue in 2022 was $4,514,528.


Official website here: www.ehlers-danlos.com

Who are the executives of Ehlers-Danlos Society and what are their salaries?

The average compensation at Ehlers-Danlos Society during 2022 was $63,575. There are 15 employees and 40 volunteers at Ehlers-Danlos Society.


Here are 14 key members and their salaries (Ehlers-Danlos Society's CEO's salary is $0 and their total compensation is $151,230):


Lara Bloom (Ceo)
  • Compensation: $0
  • Related: $151,230
  • Other: $0
Elizabeth Herndon (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Melanie Macleod (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Edward Fitzgerald Iii (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Woodrow Gandy (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Susan Haskel (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Amy Rochlin (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mitul Modi (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Michelle Jalali (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Clair Francomano (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Susan Hawkins (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
John Zonarich (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Robert Rubin (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Eric Alley (Finance Director)
  • Compensation: $77,523
  • Related: $0
  • Other: $0


Official website here: www.ehlers-danlos.com

Where can I find the form 990 for Ehlers-Danlos Society?

Ehlers-Danlos Society's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.ehlers-danlos.com

Learn more at the official website: www.ehlers-danlos.com

Mission Statement of Ehlers-Danlos Society

The Ehlers-Danlos Society is a global community dedicated to saving and improving the lives of individuals affected by Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and related conditions. This nonprofit organization is committed to advancing and accelerating research and education in EDS and HSD. They strive to develop effective and equitable therapies for these conditions by collaborating with various stakeholders.

In line with its mission, the Ehlers-Danlos Society organizes global learning conferences, undertakes collaborative research, and initiates education programs. They also conduct awareness campaigns, advocate for the affected population, and foster community building. Furthermore, they provide care and support to individuals with EDS and HSD, ensuring they have access to necessary resources and services.

In essence, the Ehlers-Danlos Society serves as a beacon of hope for those affected by EDS, HSD, and related conditions. By pursuing research, education, and advocacy efforts, they aim to improve the lives of affected individuals and their families, providing them with the resources and support they need to navigate their challenges.

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Impact




July, 2024

The Ehlers-Danlos Society is making a significant impact in advancing research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). By bringing together medical professionals from around the world, they are working on groundbreaking management and care practices for these conditions. One of their key initiatives is the Global EDS and HSD Registry, which not only facilitates better care but also opens up new avenues for research to uncover connections between EDS, HSD, and other conditions. Through funding research grants and supporting collaborative efforts, the Ehlers-Danlos Society is ensuring consistent and innovative research that directly benefits individuals living with these conditions worldwide.




This information is meant to be a general summary of Ehlers-Danlos Society. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$4,514,528 (2022)
Expenses
$4,085,098 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Program Service Revenue: $572,083
  • Gross Receipts: $4,525,671

Assets and Liabilities:

  • Total Assets: $3,182,723
  • Total Liabilities: $540,911
  • Net Assets: $2,641,812

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Programs

Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

CONFERENCE

Revenue

$572,083

Organization Details

Founding Year

1988

Principal Officer

Lara Bloom

Main Address

447 BROADWAY 2ND FLOOR 670, NEW YORK, NY, 10013

NTEE Category

Code: E99Z - Health

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