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December 10, 2015

TOPIC: Featured News, Advocacy, Get Involved

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Posted by Tim Boyd

2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of the most critical in rare disease public policy since the inception of the Orphan Drug Act in 1983.

Congress will consider legislation impacting all sectors of… Read More

December 9, 2015

TOPIC: Press Releases, Research

NORD Developing 20 Natural History Studies for 20 Rare Diseases

Posted by Jennifer Huron

To further the study of rare diseases, the U.S. Food and Drug Administration (FDA) has awarded a $250,000 grant to the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders.  NORD will use the grant to develop 20 natural history studies for 20 rare diseases based on… Read More

December 7, 2015

TOPIC: Featured News, Get Involved

Pachyonychia Congenita Project

Posted by Lisa Sencen
  1. What does it mean to you personally to be a patient organization serving the rare community? It is all about love. With a disease as rare as Pachyonychia Congenita, patients feel alone and often scared. Others around them do not understand the pain that they are dealing with while trying to live a normal life.  We are glad that… Read More

December 4, 2015

TOPIC: Featured News, Get Involved

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Posted by Lisa Sencen

When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.  

NORD’s RareCareSM Patient Services – Assistance and Access Programs

For the past 28 years, NORD has offered patient assistance programs for medication access.  Every day, the RareCareSM Patient Services team… Read More

December 4, 2015

TOPIC: Medical, Research

New SIDS Study Says Other Factors May Increase Risk

Posted by Jennifer Huron

Sudden Infant Death Syndrome (SIDS) is the latest rare disease to have trended on Facebook, following the release of a new study in Pediatrics journal on December 2. The study says that there are other factors, such as babies being exposed to smoking, which can increase the risk of sudden infant death syndrome. The study is being talked about… Read More