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September 2, 2016

TOPIC: Advocacy

NORD Responds to AHIP Report on Orphan Drug Act

Posted by Jennifer Huron

By Peter L. Saltonstall

One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA).  It was intended to stimulate the research and development of new therapies for rare diseases, which were generally neglected by the research community and the drug industry. Since 1983, more than 500 new drugs to… Read More

August 18, 2016

TOPIC: Medical, Patients & Members, Industry, Events, Get Involved

Key Dates Approaching for NORD Summit

Posted by Lisa Sencen

Advanced Pricing Deadline is Friday, August 26

Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.

Poster Abstracts are due Friday, August 19

Calling all researchers –  the theme for the 2016 poster session at… Read More

August 16, 2016

TOPIC: Research

NORD Announces Research Grants Available for Study of Rare Diseases

Posted 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. NORD’s 2016 research grant funding is available for the study of:

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins – One (1) grant of up to… Read More

August 3, 2016

TOPIC: Patients & Members

Guest Blog: Tour For A Cure

Posted by Jennifer Huron
 By Alison Rockett Frase, Guest Blogger

In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. Through the despair and dismay, a vision of faith and hope was birthed through the Joshua Frase Foundation. Our vision seemed like a dream from the outset, but with fortitude,… Read More