Erdheim-Chester Disease Global Alliance

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.

More Accomplishments

Year	Accomplishment	Details
2008	ECD Caregivers Meet	In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet.
	First Chat Session Held	With a spirit of “If you build it, they will come,” an online chat session was scheduled for all those affected by ECD. We started with a group representing only six patients.
	ECD Website Published	A website was created with the hope that it would provide much-needed information to families in search of answers for this rare illness.
2010	501(c)3 Tax Exemption Granted	ECDGA was granted federal tax exemption following the formation of the Board of Directors and Medical Advisory Board.
2011	First Grant Awarded to ECD Research	For the first time, $50,000 was awarded to an ECD researcher, and each year following. This progressive mission has set out to enhance research discoveries in Erdheim-Chester disease with the leading researchers and institutions in the field. A total of $750,000 has been granted toward this initiative to date.
	ECD Natural History Study	The National Institute of Health (NIH) was integral in ECD research and pursuing new treatments that help educate the medical community about ECD. NIH clinical director, William Gahl, M.D., Ph.D., and principal investigator, Juvianee Estrada-Veras, M.D. conducted a natural history study on the disease. The study began in 2011 and this led to a treatment trial in 2014. Multiple medical journals have been published with the data collected from this thorough study of ~60 patients.
2012	2nd ECD Research Grant Awarded	$50,000 was awarded to Drs. Haroche and Arnaud ECD research. “Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis”
	1st ECD Medical Meeting	A meeting was held in Houston, TX with investigators from various institutions in the US.
2013	1st ECD Patient & Family Gathering and Medical Symposium	ECD patients and their families came together for the first time this year and the annual event has been a successful way to bring families together ever since.
2013	1st ECD Medical Symposium	In addition to the patient meeting, the first international meeting was held this year, inviting doctors to present ECD research, case studies, and treatments. This meeting was also the catalyst for collaboration in developing the significant 2014 Blood Journal ECD Consensus document. Collaborative annual meetings have continued to take place around the world each year since.
	ECD Documentary Film	A patient documentary film was developed and produced to support outreach and education of Erdheim-Chester disease.
	3rd ECD Research Grant Awarded	$50,000 was awarded to Drs. Abdel-Wahab, Diamond, and Hyman at Memorial Sloan-Kettering Cancer Center (MSK). “Somatic Genetic Alterations in the Pathogenesis and Therapy of Histiocytic Disorders”
2014	2nd ECD Patient & Family Gathering	Patients and family members gather in Bethesda, MD for another two-day meeting including ECD presentations delivered by the experts.
	2nd International Medical Symposium	Physicians and researchers presented their work and discussed the state of Erdheim-Chester disease care for patients around the world.
	$316,000 Grant to Dr. Eli L. Diamond and Pr. Matthew Collin (Announced in 2015)	Drs. Eli L. Diamond and Matthew Collin were awarded for the development of the ECD Patient Registry. This allowed patients and physicians the opportunity to collaborate and lead research more effectively so that treatment and care can continue to improve and evolve.
2015	Development of ECD Care Center Network	Care centers with ECD-knowledgeable medical teams began to form a network to support patients with care and consultation around the world. To date, the ECDGA collaborates with 35 ECD Care Centers serving patients.
	New Website	An updated website was developed to engage members on all devices.
	$143,000 for Three Research Grants Awarded
	3rd Annual Patient & Family Gathering	Patients, families, and physicians united in Houston, TX for a memorable two-day gathering.
	3rd Annual ECD Medical Symposium	The symposium was hosted at MD Anderson Cancer Center, with Dr. Filip Janku.
2016	4^th Annual ECD Patient & Family Gathering	The first European event, held in Paris, France, included 63 attendees from 17 different countries who heard from 16 physicians about ECD organ involvement, the use of scans to monitor the disease and its treatments, techniques to manage pain, and the latest research findings including treatment options. This meeting was co-hosted with Prof. Julien Haroche.
	4th ECD Medical Symposium	The first European ECD Medical Symposium was held in Paris, France at Hôpital Pitié-Salpêtrière, where over 50 physicians gathered to collaborate and share data on ECD. This meeting was co-hosted with Prof. Julien Haroche.
	10 Languages Added to Website	Volunteers from around the globe dedicated their time and talents to translating important content in ten languages for the ECDGA website.
2017	1st FDA-Approved Drug: Vemurafenib (Zelboraf)	The Memorial Sloan Kettering Basket Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible.
	Care Centers Added to Network	Locations in Israel, China, Nashville, Canada, and Australia were welcomed to the network.
	Grand Round Medical Presentations	ECD-knowledgeable physicians were sponsored by the ECDGA to give educational talks at universities in Houston, TX, New Orleans, and Shreveport, LA.
	Pathology Conference Exhibit	The ECDGA medical community volunteered to create materials to educate attendees at an annual pathology conference. The ECDGA team hosted an exhibit booth, where they introduced and discussed ECD at length with pathologists around the world.
	5^th Annual Events in New York	Patients, family members, nurses, research teams, and numerous physicians attended the 2017 Patient & Family Gathering and Medical Symposium held in New York. Attendees were brought up to date on the latest research, treatments, and care management techniques, including the psychological effects of living with ECD. This meeting was co-hosted with Dr. Eli L. Diamond.
	$50,000 Grant Awarded to Dr. Benjamin Durham at MSK (Announced in 2018)	The ECD Global Alliance awards Erdheim-Chester disease research grant to MSK to define the disease-initiating cell population in ECD and compare genetic alterations.
2018	Hematology Exhibit	Hematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease.
	Grand Round Medical Presentations	ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist.
	6th Annual Event held in Orlando, FL at Orlando Health	A total of 109 members from eight countries attended to learn about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and about care management.
	7th Annual Events held in Milan, Italy	The purpose of the medical symposium is to unite international medical professionals in discussion and education of studies, experiences, and knowledge regarding Erdheim-Chester Disease. In this space, medical professionals are encouraged to present findings and knowledge to audience members. During the patient meeting, patients and family members are encouraged to ask questions, reach out and learn about the ultra-rare disease that affects their lives. This meeting was co-hosted with Dr. Lorenzo Dagna.
	$50,000 Grant Awarded to Dr. Nicole Coufal at UCSD (Announced in 2020)	In 2019, a $50,000 young investigator award was granted to Nicole Coufal with the University of California, San Diego. “Pathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis”
2019	Endocrinology Conference ECD Exhibit	The purpose of the ECD Global Alliance exhibition is to generate awareness of Erdheim-Chester Disease, communicate the recent research landscape and new treatment opportunities for patients, and facilitate the growth of the ECD Global Alliance medical professional network among interested physicians and scientists. In addition, connect with other exhibitors offering services that can help the ECDGA further awareness and education of ECD.
	Second Consensus Article Published	As a result of the ECD Medical Symposia in previous years, the second-ever comprehensive guidelines were published by leading ECD experts. This important document was a collaborative collection of data gleaned from extensive research of the disease and the treatment of patients worldwide.
	Chat Program	The infamous COVID pandemic pushed the ECDGA to find creative ways to engage the community. With online meetings becoming normal, the Alliance began hosting chats for various audiences. This includes patients, friends, family, caregivers, physicians, and regional and international language meetings.
2020	Community Webinars	Educational webinars hosted by our expert medical members replaced the in-person events normally held annually for the ECD community. This involved partnerships with other histiocytosis advocacy groups. These partnerships have strengthened and streamlined this project, benefiting all involved.
	High-Level Strategy Planning	The ECD Global Alliance is a small but extremely effective organization leading the fight against the disease. Over the past decade, it has helped achieve major advances in treatment and offered invaluable support to patients and caregivers. As a result, the Alliance has helped change the meaning of an ECD diagnosis. Going forward, with expanded donor investment, the Alliance has plans to accomplish even more.
2021	Webinars, Chats, and Strategy continue	The organization continues to support patients, families, and physicians with meaningful connections as much as possible during the COVID pandemic. All while implementing our 5-Year Strategy of growth and improvement.
	Virtual Medical Symposium	With a pandemic that no one expected or hoped for, the annual events were canceled for 2020. This year we pulled together our top physicians and researchers to create an online conference, continuing the collaboration and growth in the medical field without delay.

Last updated: October 30, 2021

Contact Us

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

	“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.

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