Red Fred Project
The Red Fred Project finds children living in extraordinary circumstances (rare diseases, critical illnesses, life-limiting situations) and asks them the question: If you could write a book for the entire world to read, what would it be about? The stories they share are filled with humor, compassion and wisdom. The books they create together become a vehicle for these stories. They become a lasting voice, a tangible achievement for each child. As part of the proceeds from each book sold go to the family, or to a related cause chosen by the child, the books are also a way to help with financial difficulties.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Rare Disease
This is What One of The Faces of Behcet’s Disease Looks Like
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with
Man With Soft Tissue Sarcoma is Refusing to Let His Diagnosis Spoil His Recent Marriage
According to a story from the Peterborough Telegraph, James Willis received a disaster diagnosis on his first Valentine’s Day after getting married at age 29.
Help Make #IBDvisible During Crohn’s and Colitis Awareness Week!
The first week of December is Crohn’s & Colitis Awareness Week! Courtesy of the Crohn’s & Colitis Foundation, there are a few things we can do
Experimental Gene Therapy for GM1 Gangliosidosis Earns Rare Pediatric Disease Designation
According to a story from BioSpace, the gene therapy company Axovant Gene Therapies Ltd. recently announced that it has been given Rare Pediatric Disease designation
Don’t Miss the Tampa Pig Jig for FSGS
The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for
Compassionate Care for Narcolepsy: Can You Do This? Sure!
I have a love-hate relationship with big cities. Every time I visit NYC, for instance, I feel kind of claustrophobic. I hate that you can’t
