Guest Blogger

Are you interested in submitting your story or speaking out on an issue in the rare disease community? Don’t be shy! Click here to submit your patient story--and click here to write a guest blog!

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How Rare is Finding a Romantic Relationship for Rare Patients?
Name: Christian Relationship status: Single Gender: Male Age: 25 About me: I have a rare disease called Homozygous Familial… Continue Reading
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Check Out This Empowering Rare Disease Playlist!
By Tiffany Early In this month of thankfulness, I want to take time to mention how very thankful I am for music. Now, don’t misunderstand.… Continue Reading
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Unraveling Rare: Eosinophilic Esophagitis
Eosinophilic Esophagitis (EoE) is a chronic allergic/immunologic disorder leading to inflammation of the esophagus. In this disorder, large… Continue Reading
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My Life with Ehlers Danlos: Handling Medical Anxiety
By Tiffany Early Good grief. What a crazy few weeks. I feel like I’ve been teetering on the edge of crying or screaming for days, and… Continue Reading
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Sick But Social: Did You Just Cough In My Face?
By Stacey Philpot I avoid germs like the plague because for me, well, germs pretty much are the plague. What may be just a little virus or… Continue Reading
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Sick But Social: PICC Lines and Ports
By Stacey Philpot Like many, the early stages of my diagnoses were often fraught with a rapid, fluid exchange of emotions and thought… Continue Reading
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Not Quite Empty Nest: Grief and the Special Needs Parent
By Kate Welch When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery… Continue Reading