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Supreme Court Prohibits Gene Patenting

The U.S. Supreme Court has banned patents on naturally-occurring human genes. See statement from NIH Director applauding the ruling.  See policy paper consistent with the ruling published by NORD several years ago.

CBI to Host Orphan Drug Summit in Association with NORD

To take place July 17 -18 in Philadelphia, this even will focus on next-generation drug development and commercialization strategies. More>

NORD Corporate Council Met May 14

Speakers included representatives of Avalere Health and RegenceRx on the anticipated impact of the ACA.

500 Attend NORD 30th Anniversary Celebration

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

Celebrating 50 Years of Newborn Screening

In honor of the 50th Anniversary of newborn screening, the APHL has published an online retrospective. More >

A New Film Explores Parenting a Child with Life-Limiting Illness

There will be a screening of the film on June 27^th at Genzyme Center in Cambridge, MA from 5:30pm-7:30pm. 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 >

Research Awards Announced for Alport Syndrome

The Alport Syndrome Foundation and The Kidney Foundation of Canada/Macquarie Research Fund have awarded nearly $200,000 in funding for Alport Syndrome research projects. 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>

Funding Opportunity Announced

Applications are being solicited for bone marrow failure research by the Assistant Secretary of Defense for Health Affairs, Defense Health Program, by the USAMRAA, the deadline is June 26. 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>