Rare Disease News

Rare Disease Workshop Highlights the Importance of Data Sharing in Drug Development

Published September 15, 2022 by NORD

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C-Path, NORD and FDA hosted an annual workshop September 13-14 to spotlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, …

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Upcoming Rare Disease Workshop Focuses on the Importance of Data Sharing in Drug Development

Published August 25, 2022 by NORD

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C-Path, NORD and FDA to host annual workshop September 13-14 to highlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, …

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NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

Published August 18, 2022 by NORD

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NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection WASHINGTON, DC, August 18, 2022 – The …

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NORD Statement on Passage of the Inflation Reduction Act

Published August 12, 2022 by NORD

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Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following …

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Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act

Published July 19, 2022 by NORD

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On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act …

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Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important

Published July 12, 2022 by NORD

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Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …

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A Conversation on Drug Development for Rare Diseases

Published July 7, 2022 by NORD

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Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …

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Baby Formula Shortage Highlights Need for Congress to Act on Medical Nutrition Equity

Published June 16, 2022 by NORD

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The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. …

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Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Published June 9, 2022 by NORD

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New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases June 9, …

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NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022

Published June 9, 2022 by NORD

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WASHINGTON, June 8, 2022—Today, the U.S. House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (H.R. 7667), legislation with significant implications for millions …

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