One of the big complaints with rare syndromes is that there aren’t enough clinical studies to address our needs. PROMPT is a study that combines
by Ann Ramer I had the opportunity to visit with Dr. Mark Robson this week when I travelled to NYC to follow up with my
At some point during the cancer journey, most people wonder about alternative treatments. Whether it’s because conventional treatments fail or side effects are drastically affecting
One of the first questions mutants ask after diagnosis is- where should I go to receive the best care for LFS? Like everything when living
It is difficult for most people to imagine what it is like when your child has cancer. I have tried to explain what my son
