Sharing Strength: Rebecca’s Story with ECD

Sharing Strength: Rebecca’s Story with ECD

https://www.erdheim-chester.org/wp-content/uploads/2026/02/RebeccaBooneStory-m.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....
One-Week Impact Challenge

One-Week Impact Challenge

Created using the Donation Thermometer plugin https://wordpress.org/plugins/donation-thermometer/.$30,000.00Raised $30,000.00 towards the $30,000.00 target.$30,000.00Raised $30,000.00 towards the $30,000.00 target.100.00% A generous donor has stepped forward with an...

Happy Holidays

Dear ECDGA Community, As we approach the close of the year, we want to take a moment to thank you for being such an important part of the ECDGA community. Your generosity, encouragement, and belief in our mission make a meaningful difference every single day. There is...
ECDGA Leadership Shares ECD Awareness at ASH Conference in Orlando, FL

ECDGA Leadership Shares ECD Awareness at ASH Conference in Orlando, FL

This weekend, representatives from the Erdheim-Chester Disease Global Alliance (ECDGA) participated in the American Society of Hematology (ASH) Annual Conference in Orlando, Florida—one of the world’s leading gatherings for hematology professionals and rare disease...