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Mashup Score: 0
My rare disease is called sporadic visceral neuropathy. There are only four known recorded cases worldwide and very little research on the disease. My
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1A Husband’s View on How Motivated Moms Have a Hidden Extra Gear - NORD (National Organization for Rare Disorders) - 1 year(s) ago
By Brian J. Lane Sunday morning. I slept in. It’s 8:30 or maybe 9:30, who the heck knows? It’s a Sunday after all. I roll over and wipe some drool Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1
My journey with cholangiocarcinoma (also known as bile duct cancer) began when my mom was diagnosed with the same rare cancer and passed away in 2011. In 2018, I was Read more >
Categories: Latest Headlines, Rare DiseaseTweet
In today’s #CommunityStory, Kiera shares her diagnostic journey & emphasizes how important it is for medical professionals to be trained & knowledgeable on #RareDiseases. Read more of Kiera’s story on our blog: https://t.co/oJzBV9ZVUT https://t.co/CPrTO1XThb