WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within […]
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, Netherlands into its Referral Care Center Network to help Erdheim-Chester disease patients. Leading this ECD-knowledgeable team is Dr. Jan Am van […]
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 to an $80,000 matching gift from a group of generous […]
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 […]
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 all possible. This week the ECDGA […]
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 […]
We are all aware of the COVID-19 virus (coronavirus) risks that are currently in the news. In light of this and on the advice of the CDC, it is prudent for anyone with underlying medical conditions to take precautions. Please see – https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html – for CDC guidance. In summary, the CDC recommends: Stock up on supplies (medicines, household items, […]
Last updated: February 17, 2021
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