by Asmaa Javed | Dec 31, 2024 | Voices of ECD
The diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Family and friends gather on Father’s Day to reach new heights for research on rare cancer.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Time is of the Essence By Patty Jackson In January of 2018, I took an employer-based online wellness survey that included a CBC (blood draw and analysis). I received an email stating that my white blood cell count (WBC) was significantly elevated and if I had other...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
A story of a young rare disease patient fighting over a decade for the answers to his illness. By Jessi Corkran Erdheim-Chester Disease most commonly affects adults between 40 and 70 years of age. However, as the disease becomes more well-known, it is sometimes...
by Asmaa Javed | Sep 26, 2024 | Voices of ECD
My family gives me a lot of emotional support with ECD and the accommodations I need. My response to treatment brings me a lot of hope, as when I first received Zelboraf, I felt immediately better. Along with the research being conducted on a rare disease. View...
