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Archives for: February 29th, 2016

New Jersey State House Event

Written by Christina Jensen on February 29, 2016

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for… Read More

Help Tara Pass School Bus Legislation

Written by Christina Jensen on December 18, 2015
A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share her letter with the community in an effort to spread the message and get this legislation… Read More

Taking on NYC and a Rare Disease: An Introduction

Written by Sophia Hanson on October 27, 2015

NORD-Student.Life.Blog

Sophia Hanson is a college student and has the rare disease, Lymphedema.  She is writing for NORD about the balancing act of going to college, moving away from home, and managing a rare disease.

 

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Narcolepsy Network

Written by Christina Jensen on October 5, 2015

The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy. Narcolepsy Network is gearing up for their annual conference which will be taking place this coming weekend, October 9-11 in Minneapolis, Minnesota. Click here to learn more about the… Read More