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 | Apr 25, 2025 | Webinar Recordings
Watch webinar on youtube This is the start of the Beyond the Office Visit virtual education series co-hosted with the Histiocytosis Association. Speakers Deandre Pate and Victoria Lassen from Memorial Sloan Kettering walk through ways to manage healthcare costs, find...
