This Incredible Video Is Raising Awareness for Rare Diseases

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Related to Rare Disease

16 Truths People Wish Others Understood About Rare Disease

“You have what?” “But you don’t look sick?” “I think maybe you’re exaggerating.” Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse, support groups can be hard to find, perplexed doctors fill your everyday life and invisible symptoms make it difficult to portray what you’re actually going [...]
two young children holding hands, one of whom has scars on her stomach

The Part of Rare Disease No One Talks About

Rare disease is a psychopath. It devastated our relationship/marriage with such ease, such grace and seemed to smile at us each time we tried to dust ourselves off from sequential emotional blows. It gave us no time to rebound, no time to gain composure. Creatively, it would find new ways to latch to our heels, to wrap [...]

This 8-Year-Old Just Set a New Standard for What It Means To Be a Best Friend

Dylan Siegel and Jonah Pournazarian are best friends. Jonah, 8, lives with an extremely rare liver condition called GSD Type 1b that requires him to be fed through a tube in his stomach every three hours. He’s only one of 500 children in the world with this particular condition, according to ABC News. As his best friend, [...]

The Mom I Would Have Been

Yesterday I met a friend for coffee. We each had our babies in tow (both little guys, 6 months old and 10 weeks old), and our big girls were at school. Both of our older children have special needs, and the conversation ebbed and flowed from special needs school stress to sleep schedules for new [...]