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September 21, 2015

TOPIC: Featured News

HLRCC Family Alliance

Posted by Lisa Sencen
This week’s spotlight member at NORD is the HLRCC Family Alliance. Their main goals include:
    • To teach patients how to take control of their own health once they are diagnosed.
    • To provide medical professionals with a convenient summary of the latest information available on HLRCC, and how best to manage the health of a patient with HLRCC.
    • To communicate the importance of… Read More

September 17, 2015

TOPIC: Advocacy

NORD Issues Statement on FDA Rejection of Citizen Petition

Posted by Jennifer Huron

fdaOn September 10, the Food and Drug Administration (FDA) notified the National Organization for Rare Disorders (NORD) that it was rejecting NORD’s Citizen Petition submitted in 2011 to request that a documented policy be established regarding the review of potential treatments for people with rare diseases.

NORD made the… Read More

September 16, 2015

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patient Stories, Patients & Members, Press Releases, Research

Rare Disease Day 2016 Theme and Slogan Announced!

Posted by Jennifer Huron

Rare Disease DayTheme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the… Read More

September 15, 2015

TOPIC: Featured News

NORD Named Charity of the Week By The Week Magazine

Posted by Jennifer Huron

The WeekThis past week, the National Organization for Rare Disorders (NORD) was named “charity of the week” by The Week magazine. Each charity featured in The Week has earned a four-star rating from Charity Navigator, which rates non-profits on the strength of their finances, control of development and administrative finances,… Read More