Looking Ahead: Erdheim-Chester Disease Awareness Week Is Coming Soon
As we move into the final weeks of summer, the Erdheim-Chester Disease Global Alliance (ECDGA) is preparing for one of the most impactful moments of the year—Erdheim-Chester Disease Awareness Week, observed globally from September 8 through 13.
This dedicated week is an important opportunity to raise worldwide awareness of Erdheim-Chester Disease (ECD)—a rare, life-altering blood cancer that affects individuals across continents, cultures, and communities. ECD can affect multiple organs, including the bones, brain, heart, lungs, and kidneys. Because symptoms vary widely and the disease is so rare, diagnosis is often delayed, making awareness and education especially critical.
At ECDGA, our mission is international in scope. Since our founding in 2008, we’ve built a supportive, collaborative community that now includes more than 1,000 families in over 75 countries. We are committed to ensuring that no matter where someone lives, they have access to information, resources, and a global network of support.
Erdheim-Chester Disease Awareness Week allows us to focus our efforts, share accurate information, and highlight the experiences of patients and caregivers around the world. Throughout August, we will begin rolling out educational content, awareness tools, and personal stories from across the global ECD community. These materials will help prepare supporters, families, and healthcare professionals to take part in the weeklong campaign.
This is also a time for action. We invite everyone—patients, advocates, friends, and medical professionals—to join the movement by following ECDGA on your preferred social media platform. Whether you use Facebook, Instagram, LinkedIn, or X (formerly Twitter), your voice and your shares make a difference. Each post helps raise awareness in new regions, among new audiences, and with those who may still be searching for answers.
Erdheim-Chester Disease Awareness Week follows two of our most important annual events: the Patient and Family Gathering and the International Medical Symposium, which were held earlier this year. These events brought together patients, caregivers, and leading researchers from around the world to share knowledge, strengthen connections, and highlight the latest scientific advancements in Erdheim-Chester Disease. Awareness Week builds on the momentum of those gatherings, expanding the conversation beyond the conference setting and into the broader global community.
We hope you’ll join us throughout August and beyond. Mark your calendar, follow along, and help spread the word. Together, as a global community, we can continue to shine a light on Erdheim-Chester Disease.
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.
