#RareButNotAlone – Patient Worthy

Tessa’s Journey with Acromegaly

Post author:Patient Worthy Contributor
Post published:February 18, 2026
Post category:Acromegaly

Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary…

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#RareButNotAlone: International Gaucher Day Success

Post author:Lyssé Morganette
Post published:October 17, 2017
Post category:Gaucher Disease Rare Disease

It's Guacher Disease Awareness Month! According to eurogaucher.org, International Gaucher Day was a success! This year it was observed on October 1st to bring awareness to Gaucher disease. The European Gaucher…

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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