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October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Lauren’s Story

Posted at October 10, 2019 10:34 am by Valaree DonFrancesco

My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody ever wants to hear: I was told that I had a rare form of appendix cancer. Cancers and tumors of the appendix are extremely rare, once thought to be… 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

September 27, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Nicole’s story

Posted at September 9, 2019 10:05 am by Laura Mullen

My name is Nicole and I was diagnosed with Stage 3 sarcoma cancer in July 2017 at the age of 27. It was bizarre being diagnosed with cancer in the first place, but to be diagnosed with a cancer I had never heard of was even more odd. It took me a solid month before I could… 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