PLATINUM2023

The Ehlers-Danlos Society

Our strength begins with hope.

aka Ehlers-Danlos Society   |   New York, NY   |  http://www.ehlers-danlos.com

Mission

Our Mission - The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. Our Vision - To create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.

Ruling year info

1988

President and CEO

Professor Lara Bloom

Main address

447 Broadway 2nd FL #670

New York, NY 10013 USA

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EIN

38-2813140

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

EDS HelpLine

The EDS and HSD Helpline provides information to those living with and affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders, worldwide, increasing knowledge with both patients and healthcare professionals. 10-15% of our calls are from healthcare professionals.

Population(s) Served
People with diseases and illnesses
People with disabilities
Chronically ill people

The Ehlers-Danlos Society pledged $500,000 over five years to support the opening of the Indiana University Health Center for Ehlers-Danlos Syndromes: a clinic committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. IU Health Foundation committed to a partially matched donation following the pledge. The Center for Ehlers-Danlos Syndromes, led by Dr. Clair Francomano, provides comprehensive, multidisciplinary care to people with EDS, HSD, and related conditions, and work on three key areas: clinical care, research, and education.

Population(s) Served
Chronically ill people
People with disabilities

The Medical Providers Directors is a database of providers that work with EDS and HSD patients. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS/HSD-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.

The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific doctors or clinics listed on our Medical Professionals Directory. There are no formal listing criteria, and The Ehlers-Danlos Society does not endorse, recommend or certify any of these physicians.

Population(s) Served
Chronically ill people
People with disabilities

The EDS and HSD Annual Global Learning Conference is the largest gathering of people living with EDS and HSD in the world. The conference brings together world-leading medical practitioners and researchers to educate patients and their families about EDS, HSD, and related conditions, and attending healthcare professionals across all disciplines. Virtual access is also available.

Several other virtual or hybrid conferences also take place each year.

Population(s) Served
Chronically ill people
Children and youth
Adults
People with disabilities

EDS ECHO is a series of virtual programs for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers-Danlos Syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. Enhancing care for people with all types of EDS and HSD through case-based discussions, sharing knowledge, and expert updates is at the heart of what we do.

Project ECHO addresses population health in a scalable way — moving knowledge instead of people via telementoring and collaborative care with the philosophy of we can ‘all teach, and all learn’. The heart of the ECHO model™ is its hub-and-spoke knowledge-sharing networks, led by expert specialist teams.

Participants in our programs are able to share their cases and questions in the sessions and are guided to further educational materials and support. CME/CEU/CE/Nurses credits are available to participants on our professional programs.

Population(s) Served
Emergency responders
People with disabilities
People with diseases and illnesses

The Ehlers-Danlos Society aspires to offer grants annually, with calls for clinical research proposals early in the year and for basic science later in the year. We will also offer grants of varying value to reflect the different nature of researcher requirements, including microgrants.

Population(s) Served
Academics
Academics
Researchers

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of individuals in ESD and HSD Global Registry

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of registered individuals at year end

Number of Helpline call and emails answered

This metric is no longer tracked.
Totals By Year
Related Program

EDS HelpLine

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Ehlers-Danlos Society is a global community of patients, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes and related disorders. We aim for world-wide awareness—and a better quality of life for all who suffer from these conditions. Education and research are at the center of what we do.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback

Financials

The Ehlers-Danlos Society
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The Ehlers-Danlos Society

Board of directors
as of 03/17/2023
SOURCE: Self-reported by organization
Board co-chair

Susan Hawkins


Board co-chair

John Zonarich

Susan Hawkins

John Zonarich

Clair Francomano

Susan Haskall

Ward Fitzgerald

Woodrow Gandy

Jennifer Tjernagel

Melanie McLeod

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 7/28/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/19/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.