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 simply enjoy being outside in the summer, ensure that you are […]
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 healthcare within a country’s health system) for their perspectives on the impact of rare disease. Almost all the 20 payers included in the […]
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 positive and negative charges. In the months of March and April 2020, I […]
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 (state-of-the-science) knowledge. Its main objective is to counsel physicians on the best possible and […]
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 our trusted medical professionals. Due to the increase in COVID-19 cases worldwide and the need for all our medical professionals to be on the front lines, our blog […]
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 that are considered to be in remission* from the disease. Thanks […]
Last updated: May 19, 2020
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