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July 11, 2019

TOPIC: Patients & Members, Events, Get Involved

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

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

July 1, 2019

TOPIC: Featured News, Get Involved

Help for rare disease patients impacted by Hurricane Dorian

Posted at July 7, 2019 11:37 am by Valaree DonFrancesco

NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters.

Emergency relief funds may be requested once per household/per lifetime for up to $500.

Expenses that may be covered under this award:

  • Unexpected utility costs, such as those caused by severe weather
  • Read More

June 27, 2019

TOPIC: Patients & Members, Events, Get Involved

NORD’s 2019 Living Rare, Living Stronger Weekend Highlights

Posted at June 6, 2019 09:32 am by Lisa Sencen

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… Read More