


Patient Engagement Does Not End With Understanding Patient Needs When organizations think about patient engagement, the conversation often focuses on insights. What are patients experiencing? What barriers are they facing?...

Most Clinical Trial Delays Are Visible Before the Study Begins Clinical trial delays are often treated as unexpected operational challenges. Enrollment falls behind plan. Site performance varies. Retention becomes more...

Great Patient Engagement Is Not a Function of Company Size Many emerging biotech companies assume meaningful patient engagement requires large teams, significant budgets, and extensive internal infrastructure. It’s an understandable...

Patient Engagement Is No Longer Optional for Emerging Biotech Companies Emerging biotech companies face a difficult reality. Small teams are often responsible for clinical development, regulatory planning, investor expectations, study...

I Wrote a Book. Actually, I have now written two—a fact that still surprises me daily. If you had told me twelve years ago that I would be an author,...

A Rare Diagnosis My husband and I both agree that Friday, February 13, 2015, was the worst day of our lives. We had endured a six-week diagnostic odyssey for our...

Today brings exciting news for the rare disease community, born from immense effort, patient advocacy, and a refusal to back down. In a historic move, Metachromatic Leukodystrophy (MLD) and Duchenne...
