by Asmaa Javed | Apr 29, 2025 | News
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to spotlight one of the innovative research projects currently funded through our grant program. Led by Dr. Francesco Peyronel at Meyer Children’s Hospital IRCCS and the University of Florence in Italy, this...
by Asmaa Javed | Apr 29, 2025 | News
After a day filled with knowledge, shared stories, and powerful conversations at the 2025 Patient & Family Gathering, the ECD Global Alliance invites all attendees to join us for a heartfelt and memorable Celebration Dinner—a time to pause, reflect, and honor the...
by Asmaa Javed | Apr 29, 2025 | News
When living with a rare condition like Erdheim-Chester Disease (ECD), daily choices—like what’s on your plate—can make a meaningful difference in how you feel. While there is no specific “ECD diet,” eating in a balanced, mindful way can support overall health and help...
by Asmaa Javed | Apr 29, 2025 | News
Traveling can be exciting—but for individuals living with Erdheim-Chester Disease (ECD), it can also come with added considerations. Whether you’re attending your very first ECDGA Patient & Family Gathering or returning to reconnect with the community, preparing...
by Asmaa Javed | Apr 29, 2025 | News
Every voice matters in the journey toward better understanding and treating Erdheim-Chester Disease (ECD).Whether you’re newly diagnosed, caring for a loved one, or simply looking to make a difference, there are powerful ways to get involved through the...
by Asmaa Javed | Mar 26, 2025 | News
An Introduction for Those Newly Diagnosed If you or a loved one has recently received a diagnosis of Erdheim-Chester Disease (ECD), you may be feeling overwhelmed, confused, or even scared. That’s completely understandable. ECD is an ultra-rare condition, and most...
