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November 12, 2019

TOPIC: Events, Featured News

Reflections of a First Time NORD Summit Attendee: Matthew’s Story

Posted at November 11, 2019 02:02 pm by Laura Mullen

I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy meeting (it was) with limited discussions on technical and… Read More

October 29, 2019

TOPIC: Advocacy, Events, Featured News

NORD’s Rare Action Network Mobilized for a Successful Hill Day

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 23, 2019

TOPIC: Events, Featured News

2019 NORD Summit Breaks Records with Largest Attendance Ever!

Posted at October 10, 2019 02:13 pm by Laura Mullen
Health and Human Services Secretary Alex Azar

Health and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019

 

Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit, welcoming over 900 registrants to two days of… Read More

October 1, 2019

TOPIC: Advocacy, Events, Featured News, Patient Stories

Today is #RareCancerDay!

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

September 29, 2019

TOPIC: Events, Featured News, Medical, Patient Stories

Amish Community Testimony

Posted at September 9, 2019 07:33 am by Valaree DonFrancesco

Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20.

Written By Debbie Drell, Director of Membership, NORD

According to the NIH, more than 500 affected families have been identified with Pyruvate Kinase Deficiency (PK Deficiency) in the world, but just 140 miles north of where we sit here today, you’ll find a… Read More