Mother’s Day
Sarah M Inoue
May 13, 2018
Growing up, we never celebrated Mother’s Day because my mother’s birthday was on or near the day and because, as a family, we felt an
Blog Category:
Viewpoints
How to Collect Patient Experience Data?
Maria Picone
April 25, 2018
As part of the implementation of PDUFA VI and 21st Century Cures, the FDA is continuing to develop guidance to enable more widespread usage of
A call to the rare disease community: Don’t stop sharing your experiences! Reconsider WHERE you share them
Maria Picone
March 23, 2018
In light of recent reports concerning privacy violations of millions of users’ Facebook data, patients and caregivers are telling us that they are nervous to
Patient Experience Data to Inform Regulatory Decision Making
Maria Picone
October 5, 2017
Note: The following viewpoint was written in collaboration with The Chion Foundation (chionfoundation.org). BACKGROUND Traditionally, drugs that are approved by the FDA must go through
PWS Diet Initiative: exploring diet as intervention for Prader-Willi Syndrome
Maria Picone
July 1, 2015
TREND EXPLORATION SERIES Trend Community is excited to announce our 1st Exploration. Currently, our focus is on environmental intervention in Prader‐Willi Syndrome and its co‐morbidities.