irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $1.00MTHE 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.
named programs · 3 · from sources
What they call their work
Global Learning Conferences
Annual in-person and virtual conferences that unite the EDS/HSD community, offering education, support, and interaction with leading experts
International Consortium and Collaborative Coalitions
Facilitates global collaborations including the EDS and HSD International Consortium, Comorbidity Coalition, AHEAD Coalition, and Hypermobility Biology Network to advance research and clinical standards
Medical and Scientific Symposia
Organizes global CME-accredited symposia for health professionals to review latest research, update diagnostic criteria, and develop clinical care pathways for EDS and HSD
activities · 2 groups
What they do
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Patient and Researcher Conferences 2 activities
- Hosting community education and support conferencesHosts annual Global Learning Conferences featuring expert-led sessions to provide education, resources, and peer support for patients and families affected by EDS and HSD.
- Organizing global medical and scientific symposia and conferencesOrganizes annual global medical and scientific symposia and conferences, both virtual and in-person, to review the latest research, update diagnostic criteria and clinical care pathways, and provide CME-accredited education for health professionals on Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
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Rare Genetic Disease Research and Advocacy 1 activity
- Convening collaborative research and clinical coalitionsConvenes and collaborates with multi-institutional coalitions—including the Comorbidity Coalition, AHEAD Coalition, Hypermobility Biology Network, and International Consortium—to advance research, develop clinical guidelines, and improve understanding of EDS and HSD.
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financials · form 990 · fy2024
revenue
Total revenue$4.96M
Contributions & grants$4.39M89%
Program service revenue$539K11%
Investment income$5660%
Other revenue$23K
expenses
Total expenses$4.52M
Program expenses69%
Admin / overhead25%
Fundraising6%
Salaries & benefits$1.66M
Grants paid out$1.18M
Largest expense lineCompensation
balance sheet
Total assets$8.20M
Cash$4.52M
Investments$14K
Liabilities$529K
Net assets$7.67M
Liquid reserves12.0 mo
5 years on record · 2020–2024 · YoY revenue -49.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LARA BLOOM | CEO | 50 | $215K |
| ERIC ALLEY | CFO | 40 | $86K |
board members · 14
- AISLING GREEN — DIRECTOR
- AKILAH CADET — DIRECTOR
- AMY ROCHLIN — DIRECTOR
- ANOUSHE HUSAIN — DIRECTOR
- CLAIR FRANCOMANO — DIRECTOR
- FRANCES FITZGERALD — DIRECTOR
- JOHN ZONARICH — SECRETARY
- MELANIE MACLEOD — DIRECTOR
- MICHELLE JALALI — DIRECTOR
- ROBERT RUBIN — TREASURER
- SUSAN HASKEL — DIRECTOR
- SUSAN HAWKINS — PRESIDENT
- WARD FITZGERALD — DIRECTOR
- WOODROW GANDY — DIRECTOR
relationships · 4
Who they work with
- AHEAD Coalition Partner — Collaborative coalition focused on advancing research and care for Ehlers-Danlos and related hypermobility disorders.
- Comorbidity Coalition Partner — Collaborates on developing clinical care pathways and diagnostic criteria for Ehlers-Danlos syndromes and related conditions.
- Hypermobility Biology Network Partner — Facilitates research into the biological mechanisms underlying hypermobility spectrum disorders.
- International Consortium on EDS and HSD Partner — Jointly develops clinical care pathways and management guidelines for Ehlers-Danlos syndromes and hypermobility spectrum disorders.
strategies · 2
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Clinical Guideline Developmentmethodology: collaborative-clinical-guideline-developmentBy convening international expert symposia, the organization advances clinical care through updated diagnostic criteria and management guidelines, because collective expertise leads to more accurate, widely-adopted standards that improve patient outcomes.
- Community-Integrated Education and Support Modelmethodology: community-unified-education-and-supportBy integrating education, peer support, and access to experts at annual conferences, the organization strengthens patient and caregiver engagement, because holistic programming addresses both informational and psychosocial needs, increasing empowerment and self-management.