Dear ECDGA Community, Rare should never mean invisible. This is week 2 of ECD Awareness Month, and we are asking our entire global community to help more people see, understand, and recognize Erdheim-Chester Disease. Together we make rare visible. Every day this...
One person learning about ECD may not seem like much. But one conversation can lead to an earlier diagnosis. One shared post can reach someone searching for answers. One moment of awareness can change a life. Every person who learns about ECD helps make our rare...
Ziggy Knows… Myth: ECD only affects bones. Fact: ECD can affect many organs throughout the body and few have no bone involvement. Every person’s experience is unique. That’s why expert evaluation and individualized care are so important....
Ziggy Knows… People with ECD spend years searching for answers. Research has shown that after symptoms first appear, it takes an average of 4.2 years to get an ECD diagnosis. Learning about ECD can help shorten that journey for future patients. Earlier...
Ziggy Knows… There isn’t one symptom that defines ECD. Some people experience bone pain, fatigue, excessive thirst, balance problems, skin changes, shortness of breath, or other symptoms. Every patient’s journey is different. Knowing the signs can...
Ziggy Knows… ECD is considered ultra-rare. Researchers found that about 1 to 2 out of every 10 million people were newly diagnosed with ECD in the US during 2021 and 2022. Many healthcare professionals may never encounter a patient with ECD during their careers,...
