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!

My Life with Ehlers Danlos: Illness Guilt
by Tiffany Early Initially, one of the most disabling components of my illness was the guilt that came with it. I constantly felt guilty for… Continue Reading
How To Live With a Disease Nobody Wants to Recognize
By Cynthia Prentice My name is Cynthia and since the age of eight, I have suffered with pain which was not diagnosed until I was 55. At… 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
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
IPPF Research Grant Program Now Calling for Applicants
Organization: International Pemphigus & Pemphigoid Foundation Submitted by: Marc Yale The International Pemphigus and Pemphigoid Foundation… Continue Reading
Unraveling Rare: Appendix Cancer (Pseudomyxoma Peritonei)
Pseudomyxoma peritonei (PMP) is a rare cancer that usually starts in the appendix. Most often a polyp starts in the appendix in the inner… Continue Reading
My Life with Ehlers-Danlos: How Can You Be a Champion?
Welcome to 2017, friends! I’m grateful for new beginnings- even if it only means I have to remember to write a new number when I write the… Continue Reading

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