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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 Christina Jensen

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

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 Christina Jensen

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

July 2, 2019

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Registration Open for 2019 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Christina Jensen

The time is now

  • To address affordability for patients,
  • To drive progress with a unified voice,
  • To understand the role of advancing technology in rare disease, and
  • To register for the 2019 NORD Rare Summit!

In 2019, we believe The Time is Now to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More

June 27, 2019

TOPIC: Events, Get Involved, Patients & Members

NORD’s 2019 Living Rare, Living Stronger Weekend Highlights

Posted at June 6, 2019 09:32 am by Christina Jensen

We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston. Over 500 individuals came out for a weekend filled with learning, sharing, bonding and fun. Our hope is that this event provided the tools, information and support… Read More

June 17, 2019

TOPIC: Events, Featured News, Get Involved, Patients & Members

Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!

Posted at June 6, 2019 09:21 am by Christina Jensen

NORD’s Living Rare, Living Stronger Patient & Family Forum is coming us this weekend on June 21-23 in Houston, TX. For those not joining us in-person, please join us online! You can catch select content on Facebook Live – including the Rare Impact Awards, Saturday, June 22, 7:30p.m. CST!

Tune in for… Read More