Advocating for My Son with Congenital Ichthyosis, a Rare Skin Disease
Written by Christina Fleagle There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But…
Written by Christina Fleagle There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But…
Often when a cure for a specific rare disease has yet to be developed, patients have enrolled in clinical trials with positive results. However, FDA-approved trials have developed a reputation…
For five years, 20-year-old Christopher Backlund lived with his grandfather, with whom he had a strong and meaningful bond. Unfortunately, Christopher's grandfather, Mitchell, passed away in Februay 2021. As Christopher…
Happy Thursday! This week, we have details on the beginnings of a new trial testing CRISPR gene editing for Duchenne muscular dystrophy, how parents can play a critical role in…