International Histio Advocacy Coalition Meeting Stockholm, Sweden September 2022 Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 as part of the Histiocytosis Society (HS) annual meeting. The HS is an...
A new paper published in Lancet eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD). The paper was created through a collaboration of physicians and health...
The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honors deserving volunteers during National Volunteer Week. ECDGA volunteers are the life force of...
Rare Disease Day is on February 28, 2022! In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, with 1 in 10 Americans being affected. Patients that have a rare disorder...
A rare disease advocacy group awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study. Uplifting Athletes is a nonprofit organization focused on using the platform of college football to shine a spotlight on rare diseases. Founded in 2007,...
