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July 11, 2019

TOPIC: Patient Stories

Rare Caregiver Respite: Debra’s Story

Posted by Lisa Sencen

In May, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Debra Barnum, one of the first caregivers to participate in the new program, shared how she recently spent her break.

“I was able to meet and have dinner with… Read More

July 11, 2019

TOPIC: Events, Get Involved, Patients & Members

Upcoming Externally-Led Patient Focused Drug Development Meeting for PKD Community

Posted 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 9, 2019

TOPIC: Featured News, Medical, Patients & Members, Research

New Video on PTLD Added to NORD Rare Disease Video Library

Posted by Lisa Sencen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has added a new video to the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the public.

The… Read More

July 8, 2019

TOPIC: Get Involved

Featured Student: Alexander Pham

Posted 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

July 2, 2019

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members

Registration Open for 2019 NORD Rare Summit

Posted 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