Overcoming the doctor’s ego is a first hurdle for many rare disease patients in search of a diagnosis. This article is the ...
with this journey often taking years. During this wait, people living with rare diseases are faced with the difficulty of living with a condition without the correct treatment. Once diagnosed ...
It’s easy to take health care for granted when you’re well. Yet treatment is not always available or affordable, especially ...
What are the main challenges towards gathering RWE in rare diseases? Often the patient journey is different for individual patients with the same disease, coupled with a small sample size that ...
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She Has A Rare Disease Called CLOVES Syndrome, And She's Sharing What Her Life Is LikeLindsey Johnson Edwards is a PhD student, wife, and dog mom from Texas. She’s also a rare disease patient and […] ...
Rithvik wasn’t dealt an easy hand in life. His first symptom — a distended abdomen — was identified during his birth ...
A RARE AND FATAL DEGENERATIVE DISEASE THAT CAUSES PROGRESSIVE DAMAGE TO NERVE CELLS AND LOSS OF WHITE MATTER IN THE BRAIN.
When you’re in your 30s, married to the love of your life with four beautiful children, the last thing you think you’ll hear ...
Each year, billions of dollars are spent on medical research and development to better understand and treat various diseases.
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