When I was diagnosed, I was told that as advanced as I was I had approximately 48 months to live. I feel very hopeful about the medication I am on, the support from family, friends, church, the ECDGA community volunteers, Dr. Hendrie, and the many doctors who dedicate so much time to treating this disease.
Search Our Blogs
Recent Posts
- Research Funding Opportunity
- Your ECD Research Idea Could Receive Up to $60,000
- Funding Available: Up to $60,000 for Early Career Erdheim-Chester Disease Researchers
- Introducing Mary Burgin Executive Director Erdheim-Chester Disease Global Alliance
- Arabic Webinar with Dr. Hind Salama, Consultant in Hematology and Oncology in Riyadh, Saudi Arabia: Erdheim-Chester Disease (ECD): An Educational guidance to Patients, Families, and Medical Professionals

