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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 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!

 

September 20, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Graeleigh’s Story

Posted at September 9, 2019 09:50 am by Laura Mullen

Graeleigh was diagnosed with fibrolamellar after a long battle with stomachaches. First the stomachaches started out sporadically but by the time she was diagnosed they where becoming chronic, happening almost every day.

Graeleigh had her annual well child check with her pediatrician in November of 2018. Besides the usual, making sure she is getting enough calories… Read More

September 16, 2019

TOPIC: Featured News, Patients & Members

NORD Expands Rare Disease Video Library

Posted at September 9, 2019 01:54 pm by Laura Mullen

Seven new videos have been added to the NORD Rare Disease Video Library, a unique educational resource launched earlier this summer.  The library features videos on rare diseases and related topics for patients, caregivers, medical students and professionals. 

The seven new videos are part of a series of short, animated, disease-specific videos for patient and professional… Read More

July 11, 2019

TOPIC: Events, Get Involved, Patients & Members

Upcoming Externally-Led Patient Focused Drug Development Meeting for PKD Community

Posted at July 7, 2019 08:14 am by Lisa Sencen

NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, September 20. Scholarships are available to eligible applicants to assist with travel and accommodation expenses.

If… Read More