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...
by Asmaa Javed | Mar 21, 2025 | News
At the 10th Annual ECD Conference in Barcelona, something truly unique happens—patients, families, and medical experts come together in the same room, with a shared purpose: driving progress in the understanding, care, and treatment of Erdheim-Chester Disease (ECD)....
