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
AI Company Healx Raises $56 Million Towards Treating Rare Diseases
According to a story from Venture Beat, the company Healx has succesfully raised $56 million in funds that will go towards using artificial intelligence (AI)
Data Indicates That Gene Therapy for Spinal Muscular Atrophy Could be Useful for Older Patients
According to a story from MedCity News, interim data from a phase 1/2 clinical trial testing Zolgensma, a gene therapy for spinal muscular atrophy, in
Gypsy Rose Spent Her Life Treated for Conditions She Didn’t Have: A Munchausen By Proxy Story
Gypsy Rose Blanchard spent a life suffering through neverending doctors appointments, surgeries, living in a wheelchair, and being fed through a feeding tub. As it
Sleeping Sickness: A Neglected Epidemic
Sometimes, epidemics don’t make headlines. That seems strange, a major health risk causing death to ripple through communities, and yet we’re more likely to hear
A Boy with an Extremely Rare Disorder was Finally Diagnosed Thanks to a Typo
According to a story from the TGen Blog, a simple typing mistake lead to a diagnosis for a boy with an incredibly rare genetic disorder.
Editor’s Choice: Advocating for Equitable and Accessible Health Care
Happy Thursday! It’s cold and flu season around our parts, so we hope everyone reading this has dodged the fall viruses! This week, we’re sharing
