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!

Rare Brain Disorder Has Family Considering Relocation for Better Assistance
by Kathryn Baatz My son, Andrew, was diagnosed at four months old with a very rare brain disorder known as schizencephaly. His full… Continue Reading
An Invisible Illness Survivor Turns Her Journey Into a Cinematic Resource for Patients
By Tasra Dawson My personal understanding of invisible illness started at a crosswalk in Atlanta during October of 2011. I was on a business… Continue Reading
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

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Upcoming Events

Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm