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Science Simplified: What is a Natural History Study?

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr. Brown has over a decade of experience in neurodevelopmental research and is currently the Scientific Director for TESS Research Foundation. Please reach out to her at tanya@tessfoundation.org if you have questions or comments.

Surfer grounded by PNH Treatment but Thriving!

Person's Name: 
Kirby Harness

I was diagnosed with PNH fifteen years ago, at the age of 51.  This is my story.

I grew up on the West Side of Los Angeles.  Raised by a single parent, my mother was a strong woman of faith.  My father, the eldest of twelve, died of a heart attack when I was about nine months old.  Four of his six brothers, and a couple of my cousins died at an early age.  My mother always said, “those Harness men have bad blood.”  Little did I know what she meant at the time.

Bone Marrow Disease(s): 
Content source: 
web exclusive

Ocular GVHD - Diagnosis and Treatment

In this webinar, Dr. Sandeep Jain will discuss the diagnosis and treatment of ocular GvHD which occurs in 40-60% patients following an allogenic transplant. Ocular GVHD may lead to severe ocular surface disease, which can significantly diminish quality of life and restrict daily activities. He will answer questions from participants at the end of the presentation.