Erdheim-Chester Disease is an extremely rare disorder that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells whose normal function is to fight infections. These cells, which are called histiocytes, infiltrate the loose connective tissue of the body. As a result this tissue becomes thickened, dense and fibrotic. Multiple different organs can be affected. Unless successful treatment is found, organ failure can result.Read More
Trials provide treatment and care advantages to patients and to the ECD community. See the list of trials & studies accepting ECD patients around the world by following the learn more link below.
Patients and local doctors are urged to reach out to the contacts at these centers for help in diagnosing, treating and monitoring ECD patients. Becoming an Emerging Care Center or Referral Care Center will help ECD patients get the care they deserve.
Tell your family and friends how they can help you by supporting the ECDGA. December is the last opportunity to donate in 2016. Write them a letter, email, or message in social media. Your friends and family care about you and want to help you in your fight against ECD. Tell them how the ECD Global Alliance has supported you and that by contributing in your honor they will be helping your battle with this disease. View the letter example to get started.