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 28, 2020 | Community & Support, News
ENERGY By Giuseppe De Simone (MARCH-APRIL 2020) In these difficult days, we need the energy to deal with coronavirus. So now I’m going to talk about energy. At school, I learned that electrical energy arises from the electric potential difference between...
by admin | Mar 31, 2020 | Community & Support, News, Research & Awareness
What is a consensus? A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the disease. This group of experts agree on evidence-based and state-of-the-art...
by admin | Mar 24, 2020 | Community & Support, News
The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this information with the assistance and guidance of...
by admin | Jan 30, 2020 | Community & Support
For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. These symptoms may be seen in newly diagnosed patients as well as those...
by admin | Oct 23, 2019 | Community & Support
We are 10 YEARS STRONG!! The ECDGA is raising funds for the future and we need your help! We ask you to request 10 of your friends or family to donate $10 each for a 10-week celebration! From October 10 to December 12, the 10-10-10 event will be our...
