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News and Events

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NORD Research Grants Awarded for 2013 RFPs

NORD’s Medical Advisory Committee has recommended, and the NORD Board of Directors has approved, the awarding of nine research grants. More >

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NORD Joins IL State Policy Coalition

NORD has joined the Coalition for Access to Affordable Medication to advocate against high co-insurance plans in Illinois, and to support Illinois SB 3395. More >

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View Video of NORD's Capitol Hill Briefing

On March 20, NORD hosted a briefing on patient access to treatments and related topics. A video has now been posted. More>

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NORD Supports FDA Flexibility

A recent study published in JAMA has led to debate about whether FDA should employ a "one size fits all" approach to drug reviews. Read NORD's position on this.

News for Patients

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National Hemophilia Foundation Meeting

Nominations are being sought for the 2014 Annual Meeting Awards of Distinction in Programs and Awards of Excellence. The deadline for submissions is May 19. More >

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NephCure Kidney Network

The NephCure Foundation has launched the NephCure Kidney Network, a registry of people with rare diseases that cause primary nephrotic syndrome. More >

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Online Communication Guide for Clinical Trial Participants

CISCRP and Langland have launched “Speak Out, But Speak Smart” to encourage discussion about clinical trial participation.  More >

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An Assessment of Parental Coping Strategies and Positive Growth

This survey is being conducted by the University of Newcastle, Australia, parents and caregivers of a child with a diagnosed or undiagnosed neurogenetic disorder.  More >

News for Patient Organizations

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Calendar of Public Meetings

FDA has a calendar on its website with news about upcoming public meetings. More >

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New Video from the Myotonic Dystrophy Foundation

This video features patients, caregivers and researchers as they describe living with myotonic dystrophy and the current research advances. More >

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Patient Advocacy Leadership (PAL) Awards

Genzyme has launched its 4th annual PAL Awards program for organizations that serve the lysosomal storage disorder patient community.  Proposals must be received by June 6. More >

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Public Meeting on PAH Patient-Focused Drug Development

FDA will host a public meeting on patient-focused drug development for pulmonary arterial hypertension (PAH) on May 13. More >

News for Medical Professionals

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PhenomeCentral

PhenomeCentral is a secure data repository for clinicians and scientists working in the rare disease community to share information.  More >

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10th International Podocyte Conference

The NephCure Foundation has announced that the 10th International Podocyte Conference will take place June 4-6 in Freiburg, Germany. More>

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EnRich Innovative Trial Design Course

This course is designed for pediatric healthcare and research professionals with experience in clinical trial development and an interest in better designed trials.  More >

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Overcoming Challenges in Clinical Trials of Rare Genetic Diseases

Rare disease patients and researchers are eager to connect to advance clinical research, but there are many obstacles, this report offers some insight from a PKU trial. More>

News for Industry

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President Signs Gabriella Miller #KidsFirst Research Act Into Law

This law will redirect wasteful spending on political conventions to important pediatric research. More >

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Fiscal Year 2015 FDA Proposed Budget Announced

The President is requesting a $4.7 billion budget for FDA, which is an 8.1% increase over the 2014 budget Congress passed earlier this year.  More >

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FDA Issues First Pediatric Rare Disease Priority Review Voucher

FDA issued the first Priority Review Voucher for a pediatric rare disease application, as authorized in the FDA Safety and Innovation Act of 2012. More>

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27 New Novel Drugs Approved in 2013

The FDA’s Center for Drug Evaluation and Research approved 27 new molecular entities in 2013, and one-third of these were approved to treat rare disorders. More >

WHAT IS NORD?

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases. More >

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