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December 2, 2019

TOPIC: Featured News, Get Involved

What Questions Would You Ask About Gene Editing?

Posted at December 12, 2019 08:05 am by Laura Mullen

Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases. 

NORD is creating a new educational video on this topic, and we want to be sure… Read More

August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Press Releases

Mark Your Calendars – October 1 is Rare Cancer Day!

Posted at August 8, 2019 09:19 am by Laura Mullen

Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face… 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

July 8, 2019

TOPIC: Get Involved

Featured Student: Alexander Pham

Posted at July 7, 2019 08:40 am by Lisa Sencen

NORD’s Educational Initiatives team spoke with Alexander Pham, a Massachusetts College of Pharmacy and Health Sciences student and NORD Students for Rare Chapter Leader. In this interview, Alexander talks about his desire to get involved in the rare disease community.
For more information on NORD’s student programs, click here.


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July 2, 2019

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

Registration Open for 2020 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Lisa Sencen

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