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NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children

Published April 4, 2025 by NORD

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The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) raises serious concerns for the rare disease community and families nationwide. The ACHDNC is a critical part of the U.S. newborn screening system, providing guidance to the Secretary of the Department of Health and Human Services (HHS) on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards....

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A CRISPR Approach to Genome Editing

Published December 4, 2013 by NORD

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Genome editing is a process that involves cutting out mutations in DNA and replacing them with new genetic material. This is an exciting idea because if it can be refined …

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Staying Focused on What Really Matters About the ACA

Published November 4, 2013 by NORD

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Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were …

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30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Published October 23, 2013 by NORD

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NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at …

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Even “Well Known” Rare Diseases Pose Diagnosis Problems

Published September 4, 2013 by NORD

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Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate …

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Enrollment in Your Health Insurance Marketplace

Published August 29, 2013 by NORD

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It seems like just yesterday the Supreme Court handed down its controversial decision to uphold much of President Obama’s monumental healthcare reform bill, the Affordable Care Act. But with …

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The Power of Words

Published August 19, 2013 by NORD

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Members

Quotes, mottos, and poems can be a source of motivation for many people. Speeches are often capped off with a quote from a retired world leader, actress, writer, or extraordinary …

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Informed Consent in Biobank Research

Published August 1, 2013 by NORD

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Genetic biobanks, storage facilities for DNA, genetic data and tissue samples, are becoming more prevalent in the rare disease community. The information and samples can be made available to approved …

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Supreme Court Decision Consistent With Longstanding NORD Position

Published June 14, 2013 by NORD

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Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and …

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What are Your Favorite Rare Disease Movies?

Published June 7, 2013 by NORD

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Members

Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to …

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High-School Students Raise Awareness

Published May 29, 2013 by NORD

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Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases.

Rare Disease News

Featured News

NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children

News & Articles

A CRISPR Approach to Genome Editing

Staying Focused on What Really Matters About the ACA

30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Even “Well Known” Rare Diseases Pose Diagnosis Problems

Enrollment in Your Health Insurance Marketplace

The Power of Words

Informed Consent in Biobank Research

Supreme Court Decision Consistent With Longstanding NORD Position

What are Your Favorite Rare Disease Movies?

High-School Students Raise Awareness

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