Meet Charlie! When I was pregnant with Charlie, my OB was concerned about his head growth. When he was born, his head circumference measured in… Continue reading Living with Smith-Kingsmore Syndrome
Results for "light up for rare"
We found 347 results for your search.
Me, part 1 I don’t know about you but for me, I connect with people most when I know their story, and when I share… Continue reading My HD journey
From Angioma Alliace: “Cavernous angiomas are vascular lesions comprised of clusters of abnormally dilated blood vessels. These lesions can be found in the brain, spinal cord, and,… Continue reading #sheworearaspberrybrain
 Hello, My name is Tamela. I am an award winning and internationally known mixed-media artist known as Tamela Blessed, who’s been given a second chance… Continue reading Believe Because Nothing Is Impossible
Every Valentine’s Day I celebrate with my family.  It’s also a very special day because we received Stella’s diagnosis on Valentine’s Day.  It’s a day… Continue reading Stella’s story
Lubin, aged 12, is from Juvisy, France and is living with spinal muscular atrophy (SMA) which affects 1-9 in 100,000 people. Diagnostic Journey Around the… Continue reading Meet Lubin
When I was 8 years old I was diagnosed with a brain tumour at the back of my head. I was rushed to the hospital… Continue reading From Metal Head to Literal Metal Head
How it all began My story began in 2008, only a few months after finishing one highschool year abroad. One day, it was a cold winter… Continue reading one half breath
Still not sure visual snow syndrome is a rare disease like people talk about. Feels like being near sighted and taking off your glasses. Like… Continue reading Visual Snow