Our Mission

Kathy Brewer, Founder and President

The ECD Global Alliance is dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease.  The organization works with the global community to accomplish the following:

Raise awareness of ECD.  We strive to facilitate early diagnosis of the disease and to stimulate concern and efforts to increase knowledge regarding the disease and treatments.

Provide support to those affected by the disease.  We will continue pursuing all avenues to lessen the burden as much as possible to those affected by ECD.  Providing information, referrals, and one-on-one contact with others affected by the disease are just a few of the supports that are offered through ECDGA.

Advocate for and support research programs.  The purpose of such research programs is 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.  This will include, but not necessarily be limited to, collaborating with medical personnel, research personnel, and other health organizations to help define areas where research is needed, to fund research, and to help promote the benefits of ECD research to other health agencies.  The alliance will also serve as a conduit to transfer needed information from its members to the research community per documented guidelines.

Share educational material and facilitate information sharing among interested parties regarding ECD.  This includes providing 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.

A Decade of Impact

For most people, an experience with Erdheim-Chester disease begins with a frustrating, frightening search for answers.

Read more…

This was certainly true for ECD Global Alliance founder Kathy Brewer and her late husband, Gary. At the time of his death, Gary had been ill for 20 years and very ill for three. He had symptoms of kidney disease and, in fact, underwent a kidney transplant. But it was not until his autopsy that Kathy learned Erdheim-Chester was the true cause.

This is the challenge with a very rare disease. When a condition afflicts only an estimated 1,000 people worldwide, few physicians have the familiarity required to diagnose it, particularly when it can manifest with symptoms ranging from bone pain and weight loss to problems with vision and balance. (Among many body systems, ECD can affect the pituitary and adrenal glands, the lungs, the membrane around the heart, the kidneys, and the brain.)

However, the ECD story is remarkably different today than it was in 2008, and the reason is the ECD Global Alliance. Started by patient caregivers who found each other through the internet, the Alliance has grown from six families to almost 800, and it has changed the outlook for ECD patients dramatically.

Today, most ECD patients can control the progression of the disease with one of several treatments now in use. Many have gone from facing a typical life expectancy of 3-5 years to managing symptoms as they carry on with their lives.


“Before ECDGA, there was no central place to treat the disease or get information, no organization. You would meet a doctor offering to treat you and find out they had never treated one ECD patient.” – caregiver for an ECD patient


“There is so much that has been accomplished in the last decade from a science perspective and a human perspective, and very little of that does not have the Alliance’s fingerprints on it.” – ECD researcher

The Global Alliance is exemplary—really, really advocating, reaching out to doctors, getting people out of their siloes and connected.” – ECD Care Center physician

“This organization feels like a gift. People who are invested in advancing the care for those with ECD. I have never experienced such heartfelt devotion.” – ECD patient

Our Hope for the Future

Read about the 5-Year Strategy Plan currently being implemented by your advocacy group.




Last updated: October 30, 2021

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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