Welcome to NORD

Sami Said, MD, NORD Medical Advisor and Friend

NORD is deeply saddened by the death of Sami Said, MD, Distinguished Professor of the State Univ. of NY. Dr. Said was a true friend to NORD and to the entire patient community. More >

FDA Launches New Resource for Patients

FDA’s new Patient Network is meant to educate patients about medical product regulations and to help patients participate in FDA’s decision making process. More>

NORD Corporate Council Met May 14

Speakers included representatives of Avalere Health and RegenceRx on the anticipated impact of the ACA.  Slides will be distributed to Corporate Council members.

500 Attend NORD 30th Anniversary Celebration

Historical heroes joined the next generation of advocates on stage at NORD's 30th Anniversary Celebration. More >

New Film Facing Fabry Together

This documentary follows the lives of families in Canada, Germany, Brazil and France who are living with Fabry disease. More >

Nominate a Caregiver for a Shire 2013 BRAVE Award

The BRAVE Awards recognize and honor everyday people who distinguish themselves as a caregiver to another individual(s). More >

40th Community Launched on RareConnect

There are now 40 disease-specific online patient communities on RareConnect. More >

EURORDIS Pharmacovigilance Website

EURORDIS’ new Pharmacovigilance section emphasizes the importance of reporting any problems patients experience with their medicine – whether a prescription drug or an over-the-counter treatment. More >

NORD Signs Letter Regarding Appointment of New AHRQ Director

NORD recently signed on to a letter that was sent to the Secretary of HHS, regarding the appointment of a new director for AHRQ. Read the letter >

China Launches Rare Disease Alliance

China Rare Diseases Prevention and Treatment Alliance has been formed by 17 medical institutions. More >

Patient-Centered Outcomes Research Institute (PCORI)

PCORI has issued two funding announcements for up to $68 million to support development of a National Patient-Centered Clinical Research Network.  Letters of intent are due June 19. More >

Patient Advocacy Leadership Awards

Genzyme has launched its third annual PAL Awards program for organizations that serve the lysosomal storage disorder patient community. More >

Older Antibiotic May Benefit Children with Fragile X Syndrome

A small placebo-controlled trial found that minocycline resulted in improved function and mood in children with fragile X syndrome. More>

Genetics in Primary Care Institute

GPCI's new website provides resources, references, and educational opportunities. More >

Dive into the Gene Pool

AAP and NCHPEG, will present a conference dedicated to providing primary care pediatricians with guidance to support the early identification and management of patients with genetic conditions. More>

Genetic Testing Indicated Following Diagnosis of CertainTumors

A recent study found that 41% of patients diagnosed with specific neuroendocrine tumors had a genetic mutation associated with a hereditary PGL/PCC syndrome. More >

New Drug Approvals in 2012 Highest in 16 Years

The FDA approved 39 new drugs last year, the highest number since 1996. Approximately one-third of the approvals were for orphan drugs. Read more >

Save the Date for the 3rd Annual US Conference on Rare Diseases and Orphan Products

The 3rd Annual DIA/NORD conference will be held Oct. 7-9 in Bethesda, MD. More >

NORD Sends Comments to Congress About PCIP

NORD sent a letter regarding the funding issues associated with the Pre-existing Condition Insurance Plan (“PCIP”) Program. Read the Letter >