by admin | Jan 8, 2021 | News
Erasmus University Medical Center in Rotterdam joins the ECD Referral Care Center network of hospitals skilled in treating Erdheim-Chester disease patients. The Erdheim-Chester Disease (ECD) Global Alliance welcomes Erasmus University Medical Center in Rotterdam,...
by admin | Nov 24, 2020 | Community & Support, News
A new year, new programs, and renewed HOPE are on the horizon for the ECD community! The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a matching gift campaign running from December 1 to December 31, 2020! Thanks...
by admin | Sep 13, 2020 | Community & Support, Research & Awareness
By Chris Evans – ECD Awareness Week 2020 My sister, Raina, was diagnosed with a histiocytic disorder similar to Erdheim-Chester Disease in many ways. She fought valiantly against the disease for several years, even enduring an unusually painful bone marrow...
by admin | Jun 2, 2020 | Community & Support
Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments received. Many patients are faced with other effects that are not direct...
by admin | May 19, 2020 | Community & Support
As spring slips away and summer is within our grasp, our natural urge to enjoy the great outdoors intensifies. However, even limited sun exposure can be dangerous to ECD patients under some targeted-therapies. If you are being treated with a BRAF or MEK-inhibitor, or...
