Rare Diseases Deserve Our Attention

Between 25 and 30 million Americans, many of them children, are living with a rare disease. The complex challenges facing these children and families deserve attention and demand innovative responses. NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP, understands this need, perhaps better than anyone. His connection to the rare disease community is both…

Using Data Evaluation to Support Improvements in Epilepsy Care

As a special healthcare need, epilepsy can be difficult to treat because it doesn’t affect every patient the same way. Seizures, a common epileptic symptom, vary in frequency, severity and type between people, which means that healthcare providers need to understand that range of outcomes to create treatment plans. And because epilepsy affects a small…