Unexpected Hope in Israel

An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.

Climbing for the Cure

Family and friends gather on Father’s Day to reach new heights for research on rare cancer.
Time is of the Essence

Time is of the Essence

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...
Noah Finds Courage & Purpose

Noah Finds Courage & Purpose

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...
Ben Owens

Ben Owens

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...