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July 16, 2015

TOPIC: Patients & Members, Research

NORD and University of Maryland Partner on PCORI Award to Advance Rare Disease Research

Posted at July 7, 2015 12:29 pm by Jennifer Huron

Training Program for Patients and Caregivers Will Be Offered at NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit in October

PCORI logoAn award from the Patient-Centered Outcomes Research Institute (PCORI) will help the National Organization for Rare Disorders (NORD) and the University of Maryland School of Pharmacy train… Read More

July 15, 2015

TOPIC: Research

Research Grants for Rare Disease Research Available from National Organization for Rare Disorders (NORD)

Posted at July 7, 2015 01:02 pm by Jennifer Huron

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cures of rare diseases, has announced the availability of new research grants to study rare diseases.  The deadline to submit abstracts and letters of intent is July 31.

NORD’s 2015 research grant funding is available for study of:

  • Alveolar Capillary Dysplasia – One (1)… Read More

June 17, 2015

TOPIC: Press Releases, Featured News, Research, Advocacy

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Posted at June 6, 2015 12:38 pm by Jennifer Huron

 

Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery.   Patients share their experiences in profiles that accompany this study.  Read… Read More

May 13, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Clinicians and Researchers, Sticky Posts for Advocate

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted at May 5, 2015 08:00 am by Lisa Sencen

Save The Date for NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit – October 21-22, 2015 at the Crystal City Marriott in Arlington, VA.

This is the largest and most meaningful multi-stakeholder event of its kind – Historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product… Read More

January 15, 2015

TOPIC: Research

Registries for Rare Diseases: Involve the Patient

Posted at January 1, 2015 12:47 pm by Jennifer Huron

In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD marshallboard member, talks about the importance of patient registries for rare diseases, and the role that NORD’s patient registry program has in helping… Read More