by admin | Dec 26, 2025 | Uncategorized
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...
by Asmaa Javed | Dec 31, 2024 | Uncategorized
“When you become very good at caregiving, you have to understand the difference between a ‘laugh cry’ and a ‘sad cry’,” he said as he addressed a room of people going through similar situations.
by Asmaa Javed | Dec 31, 2017 | Uncategorized
An ECD patient, along with friends and family, set out to raise awareness of ECD and funding for the ECDGA with a local restaurant fundraiser! This radio interview helped spread the word.
by Asmaa Javed | Dec 31, 2016 | Uncategorized
Holding strong to faith gives hope when terminally ill. Gerry Gallick tells the story of how he was diagnosed with a rare incurable blood disease, Erdheim-Chester Disease.
by Asmaa Javed | Dec 31, 2016 | Uncategorized
“It’s really hard knowing there is a drug out there that if I can’t get then my life is going to be over.” – Canadian patient with Erdheim-Chester Disease
by Asmaa Javed | Dec 31, 2014 | Uncategorized
A newspaper article was written about Leslie Adler, and her experiences living with ECD.
