PLATINUM2024

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

P.O. Box 775 % Kathleen G Brewer

Deridder, LA 70634 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?

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.

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

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 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 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 research studies funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

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

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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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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ECD GLOBAL ALLIANCE INC

Board of directors
as of 07/05/2024
SOURCE: Self-reported by organization
Board chair

Kathy Brewer

No Affiliation

Juvianee Estrada-Veras

Diane Schriner

David Smythe

Paul Hendrie MD, PhD.

Mohammad (Ishtiaq) Chowdhury

Kathleen Brewer Brewer

Joe Fleischhacker

Janet Froetscher

Organizational demographics

SOURCE: Self-reported; last updated 7/4/2024

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

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data