News

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NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities

New Mental Health Video Series Launches February 24 The National Organization for Rare Disorders (NORD®)...

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NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume
NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume

Expanded Medicaid/CHIP Continuous Eligibility for Children, Step Therapy Reforms, andOut-of-Pocket Prescription Cost Protections Among 2024...

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Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28
Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28

Think of 10 people you work with, 10 people you went to school with, or...

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NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy
NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy

There are several proposed policy changes occurring across government entities, many of which have the...

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National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs
National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs

NORD offers comprehensive review on statewide practices related to  screening sample retention, provides policy recommendations February...

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The team presenting their CMT4J pressure-reducing customizable boot at the Harvard Hackathon to an audience that includes CMT patients.
Hack Rare: Engaging the Next Generation of Rare Disease Innovators

By Aditya Tummala, Sydney Wiredu, Derek Liu, and Pranav Ramesh Harvard College, Class of 2026...

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Statement by National Organization for Rare Disorders CEO, Pamela Gavin, on Congress’s Exclusion of Critical Rare Disease Bills in the Continuing Resolution

For the last several years, the National Organization for Rare Disorders (NORD) has had the...

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