Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…
Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…
The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%. Compare that to the…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
Moms: The ultimate multitaskers. Whether they're stay-at-home moms or working mom, these strong ladies have a way of getting stuff done, come hell or high water - or a chronic…
Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our friends to do it or pay…
We learn the difference between cause and effect at an early age. Before we have the words to express an idea, we learn that when our bellies hurt, we cry…
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