ECD GLOBAL ALLIANCE INC
ECD GLOBAL ALLIANCE INC
EIN: 27-0759192
as of November 2025
as of November 14, 2025
Mission
The ECD Global Alliance is dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease. Towards this mission, the organization will work with the global community to: (1) To facilitate early diagnosis of the disease (2) To lessen the burden as much as possible to those affected by ECD. (3) To learn more about (a) the disease, (b) effective treatments for the disease, (c) possible cures, and/or (d) avenues to prevent the disease altogether. (4) Provide current, reliable, and factual information related to ECD to patients, loved ones, medical personnel, research personnel, media, and other organizations. It will also include promoting, sponsoring and conducting workshops, symposiums and other meetings to promote the goals of the alliance.
Ruling year
2010
President
Kathy Brewer
Main address
715 Davella Dr
Deridder, LA 70634-4731 USA
EIN
27-0759192
Diseases and conditions
Population served
People with diseases and illnesses
Caregivers
Adults
NTEE code
Specifically Named Diseases (G80)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
What we aim to solve
The ECD Global Alliance works to improve the lives of all who have been affected by Erdheim-Chester Disease around the world.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
ECD Global Alliance Grants
Grant are provided in amounts up to $50,000 per year to principal investigators who hold post-doctoral positions or beyond. Projects will ordinarily be funded for one year, where appropriate, funding requests for follow on study is encouraged. Proposed projects must have specific relevance to ECD, and show promise for contributing to the scientific advancement in this field of study
Grants to Individuals Program
Grants to investigators who seek to conduct research to find the cause, treatment or cure for Erdheim Chester Disease (ECD)
Support to those Affected by ECD
Erdheim-Chester Disease is so rare that most medical professionals have never heard of it. The ECD Global Alliance has created and supports an ECD Referral Care Center Network that allows patients to be seen at institutions committed to the care of ECD patients by knowledgeable medical professionals. The ECD Global Alliance also offers patients and caregivers access to others from around the world through the support of online chat sessions, social media, and annual international Patient & Family Gatherings.
Support Erdheim-Chester Disease Research
Raise funds to support research to learn more about ECD in an effort to find more effective, targeted and rational treatments. Connect members with medical professionals, available trials, and updated information.
Raise Awareness of ECD and Provide Public ECD Information
The ECD Global Alliance provides a website - (http://erdheim-chester.org) and various social media outlets dedicated to providing the most up-to-date information about Erdheim-Chester Disease. As well as hosting various awareness events throughout the year. The ECD Awareness week event is hosted every year during the second week in September.
Where we work
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Global
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of clients served
This metric is no longer tracked.Totals By Year
Related Program
Support to those Affected by ECD
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
This metric tracks the number of patients the ECD has serviced.
Number of clinic sites
This metric is no longer tracked.Totals By Year
Related Program
Support to those Affected by ECD
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
This is the number of ECD Referral Care Centers identified and supported.
Number of research studies funded
This metric is no longer tracked.Totals By Year
Related Program
Support Erdheim-Chester Disease Research
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
The ECDGA tracks the number and dollar amount of research projects that the organization funds.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Awareness & Education. Educate more medical personnel to dramatically improve the timeliness of ECD diagnoses.
Patient Support. Empower and strengthen a community of informed and connected patients, caregivers, and physicians.
Research Program. Enhance collaborative research with a patient-centered approach.
Sustainability. Establish long-term stability for the ECD Global Alliance so that it can continue serving the community for decades to come.
What are the organization's key strategies for making this happen?
We will be present at 3-4 medical specialty conferences annually to bring ECD to the attention of specialists who may encounter the disease and be in a position to diagnose the disease early in the progression.
Provide patient and caregiver networking opportunities to bring together patients and caregivers virtually.
Provide Patient Navigation services to help community members find the answers they need.
Host webinars, sharing information with patients, caregivers, family members, and medical professionals.
Host an international, annual conference for patients, family members, medical professionals, and scientists to facilitate collaboration and ensure the community works together to meet patient and family needs.
Launch research studies through an annual grant program.
What are the organization's capabilities for doing this?
What have they accomplished so far and what's next?
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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 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
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What challenges does the organization face when collecting feedback?
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
Financials
Revenue vs. expenses: breakdown
Liquidity in 2023 info
258.91
Months of cash in 2023 info
15.1
Fringe rate in 2023 info
8%
Funding sources info
Assets & liabilities info
Financial data
ECD GLOBAL ALLIANCE INC
Balance sheetFiscal Year: Jan 01 - Dec 31
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jan 01 - Dec 31
This snapshot of ECD GLOBAL ALLIANCE INC’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
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Business model indicators
| Profitability info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $46,596 | $115,124 | $180,662 | $596,541 | -$486,764 |
| As % of expenses | 17.6% | 98.9% | 147.6% | 291.3% | -87.8% |
| Unrestricted surplus (deficit) after depreciation | $46,596 | $115,124 | $180,662 | $596,541 | -$486,764 |
| As % of expenses | 17.6% | 98.9% | 147.6% | 291.3% | -87.8% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $311,104 | $238,125 | $303,089 | $801,337 | $417,616 |
| Total revenue, % change over prior year | 19.8% | -23.5% | 27.3% | 164.4% | -47.9% |
| Program services revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 9.9% | 0.0% | 8.1% | -3.0% | 9.9% |
| Government grants | 0.0% | 2.1% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 90.1% | 97.9% | 91.9% | 103.0% | 90.1% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $264,508 | $116,443 | $122,427 | $204,796 | $554,648 |
| Total expenses, % change over prior year | 107.2% | -56.0% | 5.1% | 67.3% | 170.8% |
| Personnel | 24.1% | 44.5% | 45.3% | 50.4% | 20.3% |
| Professional fees | 0.0% | 4.3% | 31.4% | 3.5% | 18.7% |
| Occupancy | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 41.8% | 32.2% | 0.4% | 26.0% | 44.6% |
| All other expenses | 34.2% | 19.0% | 22.9% | 20.2% | 16.3% |
| Full cost components (estimated) info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $264,508 | $116,443 | $122,427 | $204,796 | $554,648 |
| One month of savings | $22,042 | $9,704 | $10,202 | $17,066 | $46,221 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $286,550 | $126,147 | $132,629 | $221,862 | $600,869 |
Capital structure indicators
| Liquidity info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Months of cash | 21.6 | 61.8 | 74.1 | 51.3 | 15.1 |
| Months of cash and investments | 28.4 | 76.4 | 90.5 | 89.1 | 29.9 |
| Months of estimated liquid unrestricted net assets | 28.4 | 76.3 | 90.3 | 88.9 | 22.3 |
| Balance sheet composition info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Cash | $475,825 | $599,346 | $756,469 | $876,074 | $696,211 |
| Investments | $149,556 | $142,060 | $166,474 | $645,157 | $684,188 |
| Receivables | $0 | $0 | $0 | $0 | $5,520 |
| Gross land, buildings, equipment (LBE) | $0 | $0 | $0 | $0 | $0 |
| Accumulated depreciation (as a % of LBE) | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Liabilities (as a % of assets) | 0.0% | 0.1% | 0.2% | 0.2% | 0.4% |
| Unrestricted net assets | $0 | $0 | $0 | $0 | $1,030,834 |
| Temporarily restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Permanently restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Total restricted net assets | $0 | $0 | $0 | $0 | $349,732 |
| Total net assets | $625,271 | $740,395 | $921,057 | $1,517,598 | $1,380,566 |
Key data checks
| Key data checks info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President
Kathy Brewer
Number of employees
Source: IRS Form 990
ECD GLOBAL ALLIANCE INC
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
ECD GLOBAL ALLIANCE INC
Highest paid employeesSOURCE: IRS Form 990
Compensation data
ECD GLOBAL ALLIANCE INC
Board of directorsas of 3/18/2025
Board of directors data
Kathy Brewer
No Affiliation
David Smythe
David Smythe DIRECTOR
Diane Schriner
Janet Froetscher SECRETARY
Janet Froetscher
Joe Fleischhacker
Joe Fleischhaker DIRECTOR
Juvi Estrada Veras DIRECTOR
Juvianee Estrada-Veras
Kathleen Brewer Brewer
Kathy Brewer
No Affiliation
Mohammad Chowdhury
Paul Hendrie DIRECTOR
Paul Hendrie
Organizational demographics
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
Gender identity
Transgender Identity
Sexual orientation
Disability
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