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August 18, 2016

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

Key Dates Approaching for NORD Summit

Posted by Christina Jensen
NRD-1030 SummitPost_240x206

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 – One (1) grant of up to $50,000, for scientific and/or clinical… Read More

August 15, 2016

TOPIC: Advocacy, Patients & Members

NORD Publishes Expanded Access FAQ

Posted by Jennifer Huron

NORD has published a new website_ensuringaccesstoaffordabletreatmentguide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines.  In the guide, NORD answers frequently asked questions including how to determine if you are eligible for expanded access, how to apply, and what you can expect throughout… 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

July 21, 2016

TOPIC: Advocacy

NORD Issues Statement in Response to PDUFA VI Commitment Letter

Posted by Paul Melmeyer

On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI.  The PDUFA program is the agreement between the FDA and the pharmaceutical industry to pay user fees to facilitate the review of pharmaceutical products. PDUFA must be reauthorized every… Read More