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Guest Bloggers

A total of 64 posts are filed under Guest Bloggers
What to Tell People About Your Rare Disease, or Not
By Joan Friedlander In a previous post, When Illness Messes with Your Promises, I briefly touched on the issue of communicating with people… Continue Reading
Importance of Organization for a Child with a Rare Disease
By mother and advocate Taylor Gurganus Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating… Continue Reading
How to Pack for an Extended Hospital Stay
For many rare disease patients, the thought of a long hospital stay can bring up a lot of emotions—despair, fear, even the stirrings of… Continue Reading
The Side Order of Anxiety and Depression You May Receive When You Are the Caregiver of a Loved One
by Kate Welch Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the… Continue Reading
Dupuytren Disease: The Crippling Hand Condition You’ve Never Heard Of
By Dr. Charles Eaton Dupuytren disease is an inherited condition which can affect the hands. It causes scar tissue to form inside the palm,… Continue Reading
Friendships Through the Web of Chronic Illness: Through Thick and Thin
People are messy. If you’ve ever raised a toddler you’re most likely nodding your head and offering me a hearty “amen!” However,… Continue Reading
How Rare is Finding a Romantic Relationship for Rare Patients?
Name: Christian Jacobs Relationship status: Single Gender: Male Age: 25 About me: I have a rare disease called Homozygous Familial… Continue Reading
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