My story begins with my stepdaughter Robyn who lives with X-linked hypophosphatemia (XLH) for short when she fell pregnant with Leo we were so delighted… Continue reading My Stepdaughter and both grandchildren suffer with XLH
Results for "light up for rare"
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Below is what I shared on my Instagram this year for Rare Disease Day 2022: I am writing on behalf of my sister, Jennifer (May… Continue reading Jennifer (My Little Sister)
I had worked with computers my entire adult life, long hours in front of the computer take their toll on your body and your eyes… Continue reading Fighting for my eyes, fighting to be seen
Our daughter, Madison Ruby, was diagnosed with BPAN (Beta-propeller Protein-Associated Neurodegeneration, a subtype of NBIA Disorder (Neurodegeneration with Brain Iron Accumulation), on September 16, 2015… Continue reading Madison’s Mission To Cure BPAN
One of the largest clinical research organizations, Parexel supports the development of innovative new medicines to improve the health of patients. We provide services to… Continue reading Parexel
Hello from Sunny San Diego, CA, U.S.A! My name is Sarah Fulop, I am a 24 year old biochemist who is an extreme empath with… Continue reading So Why Don’t You Just Take Collagen?
Undifferentiated Connective Tissue disease – my experience so far. I wrote this a year ago in January 2021 and thought that it would be fitting… Continue reading Undifferentiated Connective Tissue disease – my experience so far
You can be brave by showing the world your true colors! I have been living a life in the spot light since I was born.… Continue reading Be brave!
The purpose of rare disease day is to shine a light on rare diseases and advocate for health equity for all those living with a… Continue reading We must do better, it’s time to do better