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 | 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...
by admin | May 5, 2020 | Community & Support
Living with a rare disease can be hard: mentally, physically, and even financially draining. A 2013 survey called the Rare Disease Impact Report (conducted in the US and UK) asked patients, healthcare professionals and payers (who finance...
by admin | Apr 21, 2020 | News
You are likely already a member of the ECD Global Alliance and we hope that you have been able to find help and comfort in the resources that we have available to our members. It is our amazing team of volunteers, donors, medical professionals, and staff who make it...
