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August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Press Releases, Sticky Posts for Homepage

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

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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

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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.

Read More

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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 2019 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

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July 1, 2019

TOPIC: Featured News, Get Involved, Sticky Posts for Homepage

Help for rare disease patients impacted by Hurricane Dorian

Posted at July 7, 2019 11:37 am by Laura Mullen

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

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Alone we are rare. Together we are strong.®