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
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
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!
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.