Written by Rohan Narayanan on September 30, 2022
September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.
The Chondrosarcoma Foundation is sharing the story of firefighter Steven Mathews in… Read More
Written by Rohan Narayanan on October 29, 2021
I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009.
Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries… Read More
Written by Rohan Narayanan on September 30, 2021
I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone… Read More