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!

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
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
Caregiving Tips for the Holidays
Caregiving at any age is challenging at times.  Being responsible for the medical, emotional, and  financial care and well being of a… Continue Reading

Follow us on Twitter