PLATINUM2025

ECD GLOBAL ALLIANCE INC

aka Erdheim-Chester Disease Global Alliance   |   Deridder, LA   |  http://erdheim-chester.org/

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 info

2010

President

Kathy Brewer

Main address

715 Davella Dr

Deridder, LA 70634-4731 USA

Show more contact info

EIN

27-0759192

NTEE code info

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

SOURCE: Self-reported by organization

The ECD Global Alliance works to improve the lives of all who have been affected by Erdheim-Chester Disease around the world.

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?

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

Population(s) Served

Grants to investigators who seek to conduct research to find the cause, treatment or cure for Erdheim Chester Disease (ECD)

Population(s) Served

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.

Population(s) Served
People with diseases and illnesses
Caregivers

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.

Population(s) Served
People with diseases and illnesses
Caregivers

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.

Population(s) Served
Adults

Where we work

  • Global

Videos

Our results

SOURCE: Self-reported by organization

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

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.

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.

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.

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 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 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 find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

ECD GLOBAL ALLIANCE INC
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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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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.

ECD GLOBAL ALLIANCE INC

Board of directors
as of 3/18/2025
SOURCE: Self-reported by organization
Board chair

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

info Candid has made improvements to the race and ethnicity options.

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:

Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability