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
Pierre Robin Sequence: EU Family Seeks Appeal After Denial of Treatment Coverage
Philippe Pakter’s daughter Lysiane was born on March 29th 2017 in Lyon, France. However, soon after her birth, Philippe and his partner Delphine were hit
Editor’s Choice: So How Close Are We to Artificial Nerve Cells?
Happy Thursday, Patient Worthy Friends! This week we’re highlighting two stories on families who went on a diagnostic odyssey to understand their children’s rare diseases.
Generic Drugs from India Have Safety Issues. The FDA Can’t be Bothered
According to a story from The People’s Pharmacy, the US Food and Drug Administration (FDA) has given the green light for the use of generic
The Results From This Immune Thrombocytopenia Trial are Good News for Patients
According to a story from ucb.com, the biopharmaceutical company UCB has recently released the final results from its phase 2 clinical trial which tested the
When Cone Dystrophy Took His Eyesight, This Painter’s Art Evolved
By Jack Gerard from In The Cloud Copy Travis Allen, of Lisbon, Iowa, was a painter who specialized in photorealistic works. Unfortunately, a rare
NORD’s Rare Disease Database Provides Crucial Information on Rare Diseases
According to a story from the Washington Post, rare diseases are a much more widely spread problem than you might think. There are at least
