Author Archives: Mary Chapman

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Newron Seeks Participants for Global Survey on Burden of Rett

In partnership with the Rett syndrome community, Newron Pharmaceuticals has launched a groundbreaking International Rett Syndrome Burden of Illness Survey. The first of its kind, the study will examine the physical, emotional, and financial impact of Rett syndrome on patients, families, and caregivers. Its findings are expected…

Rettsyndrome.org’s New CSO Has a Personal Connection to Disease

A highly accomplished clinician and researcher, Dominique Pichard brings impressive credentials to her role as the International Rett Syndrome Foundation’s (Rettsyndrome.org) new chief science officer. As the mother of a daughter with Rett, she brings invaluable perspective. A physician specializing in dermatology, Pichard was doing her medical…

Rettsyndrome.org Funds Research of Rett and MECP2 Syndromes

Two scientists will receive a total of $850,000 to advance treatment and diagnostic projects in Rett syndrome and MECP2 Duplication syndrome. Rettsyndrome.org, a leading private funder of Rett syndrome research, will award Jeannie T. Lee, MD, PhD, of Massachusetts General Hospital in Boston a $600,000, two-year…