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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

There are ostensibly 257 PKD patients in the world, but just 140 miles north of where we sit here today, you’ll find a community where PKD is not rare. The Amish community of “Big Valley”… Read More

September 27, 2019

TOPIC: Events, Featured News

BioNews Service Previews 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit

Posted at September 9, 2019 08:42 am by Laura Mullen

On September 26, BioNews Service published an extensive article written by reporter Larry Luxner, previewing the upcoming NORD Rare Diseases & Orphan Products Breakthrough Summit, which will be taking place October 21-22 in Washington, DC.

#NORDinthenews

September 25, 2019

TOPIC: Events, Featured News, Patients & Members

2020 Living Rare, Living Stronger NORD Patient and Family Forum Location Announced

Posted at September 9, 2019 03:23 pm by Laura Mullen

NORD President and CEO Peter L. Saltonstall has some breaking news to share on the city we are taking the Living Rare, Living Stronger: NORD Patient and Family Forum to in May 2020, plus the amazing venue for the Rare Impact Awards. Get ready to rock!

 

August 14, 2019

TOPIC: Events, Featured News

FDA Acting Commissioner to Deliver NORD Rare Summit Keynote

Posted at August 8, 2019 04:26 pm by Lisa Sencen

We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became Acting Commissioner of FDA earlier this year and previously served as the director of the National Cancer Institute.

In addition… Read More