Ehlers-Danlos Society

Our strength begins with hope.

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

Mission

The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, & supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. We support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, & care for the EDS & HSD population. Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. Our strength begins with hope.

Ruling year info

1988

President and CEO

Ms Lara Bloom

Main address

1732 1st Ave #20373

New York, NY 10128 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.

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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 the Ehlers-Danlos syndromes and hypermobility spectrum disorders, worldwide, builds awareness, and increases knowledge with both patients and healthcare professionals.

Population(s) Served
People with diseases and illnesses

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 physical 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

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 top medical practitioners and researchers to educate patients and their families about EDS, HSD, and related conditions. Virtual access is also available.

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

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

Increasing

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.
  • Who are the people you serve with your mission?

    The Ehlers-Danlos Society supports people all around the world living with the 13 types of Ehlers-Danlos syndromes, and the hypermobility spectrum disorders, their family, friends, and healthcare professionals.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Suggestion box/email, Breaking Down Barriers initiative,

  • 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,

  • What significant change resulted from feedback?

    Offered Let’s Chat virtual support groups at times to suit all timezones, created COVID-19 specific groups, and quarterly groups for specific demographic groups in our community such as LGBTQIA+. Implemented ALT text and image descriptions on our social media posts to increase accessibility. Created an Ask The Society webinar with an opportunity to ask questions to the President and CEO, and Chair of the Board of Directors about all aspects of the Society’s programming and mission.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    The collaboration with the community has seen attendance in the Let’s Chat groups grow rapidly with excellent feedback from people finding support. Average group size has grown from 15 to 40 per online group meeting and feedback internationally is positive that more are able to attend and find support, and in turn feel more aligned with the Society. Feedback from Breaking Down Barriers has developed relationships internationally with diverse groups in the community to inspire resource development, increase representation in campaigns and in campaign ideation.

  • 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

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

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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

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Ehlers-Danlos Society

Board of directors
as of 9/16/2021
SOURCE: Self-reported by organization
Board co-chair

Susan Hawkins


Board co-chair

John Zonarich

Linda Neumann-Potash

Dick Malenfant

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 07/28/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 07/19/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. 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.