Every year, a powerful wave of determination, compassion, and solidarity spreads across the globe as individuals lace up their shoes to participate in the Erdheim-Chester Disease Global Alliance’s (ECDGA) annual Run, Walk & Roll for Hope. Scheduled for 2025, this event offers a unique opportunity to make an impact for a rare and often overlooked disease—Erdheim-Chester Disease (ECD).
ECD is a rare blood cancer that can affect multiple organs in the body, and because it is so uncommon, awareness is one of our most vital tools. Many patients spend years searching for a diagnosis, often consulting numerous doctors without answers. By participating in the Run, Walk & Roll for Hope, you are helping to change that. You are not just logging miles—you are amplifying voices, stories, and crucial medical knowledge.
Whether you join the event solo or as part of a team, in person or virtually, your involvement makes a real difference. Each step you take raises awareness for a disease that needs visibility. Each donation helps fund research and support for those affected by ECD. And each conversation sparked by your participation spreads the word further.
This event is designed for everyone—whether you’re a seasoned runner, a casual walker, or someone who rolls along in a wheelchair or stroller. It’s a movement in every sense of the word: accessible, inclusive, and grounded in hope. Families walk together in honor of loved ones, survivors roll with strength and pride, and friends run in support of someone they care about deeply. No matter how you choose to move, you’re moving the mission forward.
ECDGA provides helpful tools to make your experience even more impactful—from team-building guides and fundraising resources to storytelling templates and printable awareness materials. Participants often share their journey on social media, inviting others to learn more about ECD and join the cause. These personal stories are the heartbeat of the campaign, creating waves of awareness far beyond race day.
So this year, let your steps stand for something bigger. Join the 2025 Run, Walk & Roll for Hope and become part of a global effort to bring Erdheim-Chester Disease out of the shadows and into the light.
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.