Together, We Move Forward
From the Erdheim-Chester Disease Global Alliance
As we step into 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) reflects on another meaningful year of connection, progress, and unwavering commitment to our mission. From our earliest days as a grassroots network of caregivers to a global nonprofit supporting over 1,050 patients and families in 76 countries, ECDGA remains focused on awareness, education, research, and support for those affected by Erdheim-Chester Disease (ECD).
Our work is grounded in compassion, fueled by community, and directed by a clear mission: to ensure that no one navigating this disease walks alone. Whether you are newly diagnosed, a long-time supporter, a caregiver, or a clinician, we thank you for being part of this journey.
A Legacy Born from Love and Determination
The origins of ECDGA are deeply personal. In 2007, Kathy Brewer lost her husband, Gary, after years of unanswered medical questions. It was not until after his death that the diagnosis of Erdheim-Chester Disease was made. This painful journey sparked a promise—a commitment to help others avoid the same isolation and uncertainty Kathy and Gary had faced.
In April 2008, Kathy connected with two other caregivers online. Together, they organized a small chat session for others affected by ECD. This simple act of community-building was the beginning of what would grow into a global organization. With encouragement from patients and doctors, ECDGA launched its first website in 2008 and became an official 501(c)(3) nonprofit in 2009.
Today, ECDGA serves as a lifeline to patients and families across the globe. Kathy’s promise became a movement, and the alliance she helped create continues to change lives every day.
What is Erdheim-Chester Disease?
Erdheim-Chester Disease is an extremely rare form of blood cancer classified as a non-Langerhans cell histiocytosis. It is caused by the abnormal buildup of immune system cells called histiocytes, which can infiltrate organs and tissues, leading to inflammation, scarring, and damage. These histiocytes are typically involved in protecting the body, but in ECD, they behave abnormally.
ECD can affect nearly any organ system. Commonly involved areas include the long bones, kidneys, heart, lungs, and central nervous system. Symptoms may vary widely, from joint pain and fatigue to more serious complications such as kidney dysfunction, cardiac issues, or neurological symptoms. Because of its rarity and diverse presentations, ECD is frequently misdiagnosed or diagnosed late.
The discovery of genetic mutations in the MAPK pathway, particularly the BRAF V600E mutation found in more than half of ECD patients, has led to a better understanding of the disease and the development of targeted therapies. However, more research is needed to fully understand ECD and improve outcomes for all patients.
The Erdheim-Chester Disease Global Alliance does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
Research That Drives Change
Research continues to be one of the foundational pillars of ECDGA’s mission. Since our founding, the alliance has funded 17 research projects and developed a patient registry to assist in ongoing and future studies. Together, these initiatives have contributed more than $1.3 million to ECD research, allowing for advancements in understanding the disease’s genetic mutations, improving diagnostic methods, and informing clinical trials for targeted therapies.
This progress is a direct result of generous donations, partnerships with leading research institutions, and a shared commitment to advancing care. The impact of these efforts can be seen in the improved quality of life and treatment outcomes experienced by many within the ECD community.
Yet, the journey is far from over. There are still many unanswered questions about ECD’s underlying mechanisms, long-term treatment effects, and optimal care strategies. ECDGA remains dedicated to supporting new and ongoing research efforts in collaboration with medical centers and physicians around the world.
Events that Build Knowledge and Community
One of the most meaningful ways ECDGA brings our community together is through our annual events. Each year, we host two back-to-back gatherings that serve patients, families, and medical professionals.
The first is our Patient and Family Gathering, a one-day event designed to support and educate those living with or caring for someone with ECD. This event provides patients and families with the opportunity to hear directly from medical experts who specialize in ECD, ask questions, and share experiences. It is a time for connection, learning, and empowerment. Attendees often leave with a renewed sense of hope and a deeper understanding of their condition.
Following this event is the ECD Medical Symposium, an annual meeting for healthcare professionals and researchers focused on ECD. This symposium is the only international meeting dedicated solely to ECD, drawing specialists from multiple disciplines to discuss the latest scientific findings, clinical approaches, and research advancements. The exchange of knowledge and collaboration that occurs here is vital to improving patient care and advancing the field.
In addition to these two events, a third meeting is held exclusively for ECD Care Center physicians and their teams. This session allows for collaboration between care centers, fosters relationships across institutions, and helps ensure patients can find expert care closer to home.
These events are more than conferences—they are bridges between science and compassion, connecting people through shared purpose.
Raising Awareness to Accelerate Diagnosis
One of the greatest challenges for those affected by Erdheim-Chester Disease is delayed or incorrect diagnosis. Because ECD can present like many other conditions, it often takes years for patients to receive the correct diagnosis. Raising awareness among the public and healthcare providers is critical to shortening this journey and improving outcomes.
In 2025, ECDGA will continue to expand its awareness efforts through educational campaigns, social media outreach, and the distribution of updated materials to medical providers. We are also launching patient storytelling initiatives to highlight the personal impact of ECD and give voice to those living with this rare disease.
Every conversation about ECD is a step toward earlier diagnosis, better care, and greater visibility for the community.
Our Global Impact
The reach of ECDGA has grown significantly since our founding. Today, we are proud to share the following milestones:
- Support for more than 1,050 patients and families worldwide
- Representation in 76 countries
- Recognition of 41 ECD Care Centers around the globe
- Funding for 17 scientific research projects
- Over $1.3 million dedicated to research and support initiatives
These achievements are a reflection of the community that has come together in support of this mission—from individual donors to world-renowned physicians, from family caregivers to research advocates.
Looking Ahead with Gratitude and Purpose
As we move through 2025, we remain filled with gratitude for every person who has supported ECDGA’s mission. Your generosity, time, and compassion have fueled the progress we’ve made and the hope we continue to share.
Whether you’ve contributed financially, volunteered your time, participated in a support chat, or simply helped spread awareness, you are part of a movement that is making a real and lasting difference.
Together, we will continue to fight for answers, for treatments, and for a future where ECD is not only treatable—but curable.
Thank you for being part of our journey. We look forward to all we will accomplish together in the year ahead.
With deep appreciation,
The Erdheim-Chester Disease Global Alliance
DeRidder, Louisiana
Disclaimer: The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.