Raising awareness for a rare disease like Erdheim-Chester Disease (ECD) takes more than facts and figures—it takes people. It takes passion, imagination, and community spirit. And during Volunteer Month, we’re thrilled to recognize a very special kind of volunteer: the fundraisers who turn everyday events into life-changing impact. At the Erdheim-Chester Disease Global Alliance (ECDGA), […]

Progress in Erdheim-Chester Disease (ECD) doesn’t happen in isolation. It’s made possible through collaboration—among researchers, clinicians, and the patients and families who push forward despite the unknowns. At the center of this progress stands the Medical Advisory Board of the Erdheim-Chester Disease Global Alliance (ECDGA): a team of expert volunteers shaping how we understand, research, […]

Honoring the ECDGA Board of Directors: Volunteers in Leadership Behind every thriving organization is a team of dedicated individuals who believe in its mission so deeply that they lead not for recognition or reward—but because they care. At the Erdheim-Chester Disease Global Alliance (ECDGA), this team is our Board of Directors, a remarkable group of […]

When someone first hears the words Erdheim-Chester Disease (ECD), it can feel like stepping into unfamiliar territory—an ultra-rare diagnosis that most have never encountered. But from the very beginning, one thing the ECD community makes clear is this: you are not alone. Behind the digital spaces where patients, caregivers, and grieving family members come together […]

              Hope in the Lab: MSK Research Sheds Light on ECD and the Brain A newly published study featured in the March 26, 2025, Memorial Sloan Kettering Cancer Center (MSK) Research Highlights offers important insight into how Erdheim-Chester Disease (ECD) and similar histiocytic disorders may affect the brain. This […]

The Erdheim-Chester Disease Global Alliance (ECDGA) is honored to support forward-thinking research that helps unravel the mysteries behind Erdheim-Chester Disease (ECD). One of our most compelling funded projects, awarded in 2023 with a two-year, $200,000 research grant, is led by Dr. Matthew Collin in collaboration with Dr. Jyoti Nangalia and Dr. Eli Diamond. Their study, […]

The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to spotlight one of the innovative research projects currently funded through our grant program. Led by Dr. Francesco Peyronel at Meyer Children’s Hospital IRCCS and the University of Florence in Italy, this project aims to significantly enhance our understanding of long-term outcomes in Erdheim-Chester Disease (ECD) through […]

At the 10th Annual ECD Conference in Barcelona, something truly unique happens—patients, families, and medical experts come together in the same room, with a shared purpose: driving progress in the understanding, care, and treatment of Erdheim-Chester Disease (ECD). This is the only event dedicated to creating a direct connection between those living with ECD and […]

Erdheim-Chester Disease (ECD) is a complex and rare condition that can affect multiple organs and systems in the body. From the bones and heart to the kidneys and brain, ECD’s impact is often widespread. Because of this, a team-based, multidisciplinary approach to care isn’t just helpful—it’s essential. When specialists from different fields work together, patients […]

Fatigue is one of the most common—and often most frustrating—challenges faced by individuals living with Erdheim-Chester Disease (ECD). This isn’t just feeling tired at the end of a long day. Chronic fatigue associated with ECD can impact nearly every aspect of daily life, from completing basic tasks to participating in activities you enjoy. Many ECD […]

Want to view the page below in a different language? For over 15 years, the Erdheim-Chester Disease Global Alliance (ECDGA) has been a beacon of hope for patients, families, and researchers dedicated to understanding and treating Erdheim-Chester Disease (ECD). Since our founding in 2009, we have supported more than 1,000 families worldwide, funded groundbreaking research […]

Want to view the page below in a different language? Over the past decade and a half, remarkable advancements in Erdheim-Chester Disease (ECD) research have reshaped our understanding of this rare condition. Scientists and medical experts have uncovered critical insights into its genetic drivers, developed new targeted therapies, and improved diagnostic methods—paving the way for […]

  Want to view the page below in a different language? In less than three months, the global Erdheim-Chester Disease (ECD) community will come together for the 10th Annual ECD Conference in Barcelona. This milestone event unites medical experts, researchers, patients, and families in a shared mission: to advance knowledge, foster connections, and drive progress […]

Fatigue is one of the most common and challenging symptoms experienced by individuals with Erdheim-Chester Disease (ECD). Unlike typical tiredness, ECD-related fatigue can be persistent and overwhelming, affecting daily activities, work, and overall well-being. While there is no single solution, there are strategies that can help patients manage their energy levels more effectively. Understanding Fatigue […]

Want to view the page below in a different language? For those living with Erdheim-Chester Disease (ECD) and their loved ones, finding a supportive community and reliable medical insights can make all the difference. The ECD Patient & Family Gathering is designed to connect, educate, and empower individuals affected by this rare disease. A Unique Opportunity to […]

Want to view the page below in a different language? Erdheim-Chester Disease (ECD) is a rare histiocytic disorder that often goes undiagnosed for years due to its varied and complex symptoms. Early recognition by both patients and medical professionals is crucial for timely intervention and improved outcomes. Why Is Early Diagnosis Important? Many patients with […]

Tomorrow is the last day for EARLY BIRD PRICING! 10th Annual Erdheim-Chester Disease International Conference Conference Dates: 26-28 May https://secure.qgiv.com/for/barcelonapatientfamilygathering/event/2024ecdmedicalsymposium-barcelona/ Conference Location: Barcelona, Spain Early Bird Pricing Ends: 28 February Register TODAY: https://secure.qgiv.com/for/barcelonapatientfamilygathering/event/2024ecdmedicalsymposium-barcelona/ Schedule of meetings: 26 May – Patient & Family Gathering 27 May – Medical Symposium 28 May – Care Center meeting Learn […]

Want to view the page below in a different language? 10th Annual Erdheim-Chester Disease International Patient & Family Gathering Friday is the last day for EARLY BIRD PRICING! Prices increase March 1! Conference Dates: 26 May 2025 Conference Location: Barcelona, Spain Early Bird Pricing Ends: 28 February Register TODAY: https://secure.qgiv.com/for/barcelonapatientfamilygathering/ Learn More: https://www.erdheim-chester.org/ecd-patient-family-gathering/ Please register […]

Want to view the page below in a different language? Every year, on the last day of February, the global community comes together to recognize Rare Disease Day—a vital initiative that highlights the challenges faced by individuals living with rare conditions. On February 28, 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) is proud to join […]

Want to view the page below in a different language? ECD Global Alliance shows our stripes for Erdheim-Chester Disease awareness on #RareDiseaseDay, February 28. There are 300 million people with rare diseases. The lack of scientific knowledge and quality information on each rare disease often results in a delay in diagnosis. Individuals with rare a […]