Privacy and Discovery
Lucy Steinert
March 4, 2020
Last year, I was looking at an issue to help a small business in Jamaica take payments from the U.S. Such transactions are complicated because
Blog Category:
Viewpoints
Lessons Learned from Rare Disease Week
Sefton Eisenhart
February 27, 2020
Rare Disease Week on Capitol Hill officially started yesterday, and an incredible group of people arrived in Washington to drive progress and expand support. There
The CRS Community’s Continued Fight
Sefton Eisenhart
February 6, 2020
Rubella is an infection that was misunderstood for much of its history. It was initially thought to be a type of measles. In the early
How to Foster Positive Growth in 2020
Sefton Eisenhart
January 2, 2020
It is early January, and if you are like most people, you probably have some things you want to accomplish in 2020. Resolutions are easy
Achieving Privacy, Trust and Transparency for Rare Disease Communities on Social Media
Sarah M Inoue
January 4, 2019
TREND Community aspires to create a social media platform focused on the needs of rare and chronic disease communities. These communities use social media to
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
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.