Scroll
To Top

Archives for: February 28th, 2018

NORD Rare Disease Day Tweetchat

Written by Christina Jensen on February 28, 2018
In celebration of Rare Disease Day 2018, NORD will moderate a tweetchat on the important topic “What To Do If You or Your Child Receive a Rare Disease Diagnosis” with co-hosts Boston Children’s Hospital and The Mighty.
Join us! The tweetchat is an opportunity for patients, experts, doctors, the rare disease community… Read More

NORD & ABC News Rare Disease Day Tweetchat

Written by Christina Jensen on February 28, 2017

In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. The tweetchat will take place on Tuesday, Feb. 28, 2017 at 1:00 p.m. EST.

This is the fourth annual tweetchat that ABC… Read More

Registries for Rare Diseases: Involve the Patient

Written by Jennifer Huron on January 15, 2015

In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD marshallboard member, talks about the importance of patient registries for rare diseases, and the… Read More