Registration is open for the Patient and Family Gathering taking place April 29–30, 2026, in Birmingham, Alabama. This event brings together patients, families, and caregivers to connect with others in the community, hear from experts, and learn about the latest...
https://www.erdheim-chester.org/wp-content/uploads/2026/02/Today-Is-Rare-Disease-Day-Stand-With-Us.mp4 Your support helps create awareness, compassion, and hope. Here’s how you can help today: Share your story Make a gift to support our mission Learn more and advocate...
Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to your body and working closely with your healthcare team is key. If you do not have a nutritionist on your medical...
https://www.erdheim-chester.org/wp-content/uploads/2026/02/Rebecca-Boone-s-Story.mp4 Ziggy recently had the pleasure of interviewing Rebecca Boone about her journey with ECD. Rebecca shared her personal experiences, challenges, and the impact ECD has had on her life....
As we prepare for Rare Disease Day, it’s a good time to ask a simple question: What does “rare” really mean? In the U.S., a disease is considered rare if it affects fewer than 200,000 people, according to the National Organization for Rare...
A look back at the moments, milestones, and messages you may have missed. As 2025 comes to a close, we’re taking a moment to look back at a year that brought connection, education, progress, and support to the ECD community around the world. Whether you’ve been...
