January 27, 2020
TOPIC: Advocacy, Featured News, Get Involved
Posted at January 1, 2020 09:55 am by Laura Mullen
- Tell us a little bit about yourself! Where are you from?
I’m Allison Herrity and I’m from Arlington, Virginia!
- Where do you attend school and what are you studying?
I’m a senior at the George Washington University studying public health. I’ll also be staying at GW for an extra year after I graduate to complete an… Read More
January 17, 2020
TOPIC: Advocacy, Featured News, Patients & Members
Posted at January 1, 2020 08:35 am by Laura Mullen
At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation
Leah advocates for those living with… SCN2A Disorders
Leah is located in… Gettysburg, PA
How Leah got here…
My son had his first seizure a few days after his first birthday. Our… Read More
January 16, 2020
TOPIC: Advocacy, Featured News, Press Releases, Rare Disease Day
Posted at January 1, 2020 10:21 am by Laura Mullen
Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes. NORD is imploring the world at large to show… Read More
October 29, 2019
TOPIC: Advocacy, Events, Featured News
Posted at October 10, 2019 05:58 pm by Laura Mullen
On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a… Read More
October 1, 2019
TOPIC: Advocacy, Events, Featured News, Patient Stories
Posted at October 10, 2019 08:32 am by Laura Mullen
The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition, the goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support.
“I’ve never heard of that!” is often the response people living with rare cancers hear… Read More