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
ICYMI: Director of FDA’s Center for Drug Evaluation Discusses Accelerated Approval, Benefits of Master Protocols
According to a recent publication from BioPharma Dive, Dr. Janet Woodcock sat for an interview at the Biotechnology Innovation Organization’s annual conference in Philadelphia earlier
New Discoveries Reveal Further Connections Between the Gut Microbiome, Human Health, and Rare Diseases
According to a story from bioengineer.org, a team of researchers associated with Oregon State University are making further headway in understanding the connection between our
Women with Breast Cancer Risk Must Weigh the Unknowns of Certain Types of MRIs
Meredith Resnick’s breast cancer risk is 42%. This risk is made up of her higher breast density (denser breasts are associated with increased risk), Ashkenazi
Researchers Discover Way to Modify Rheumatoid Arthritis Drugs to Reduce Immune Suppression
“A new way to improve the efficacy of a drug taken by millions of patients throughout the world.” Background Adalimumab (also known as Humira) and
Phase 2 Clinical Trial for Microvillus Inclusion Disease Approved to Begin in Turkey
MVID Microvillus inclusion disease (MVID) is a rare, gastrointestinal disease which can cause impaired development in children. It is characterized by severe diarrhea which leads
Editor’s Choice: Shady Stem Cells, Anti-Virals and Young Adults Fighting Cancer
Happy Thursday! Today, we’re highlighting four articles on rare disease news. First, we have a story on a lawsuit against controversial stem cell treatments. Next,
