Rare Disease News

Help NORD Spread Cheer This Holiday Season!

Published November 14, 2023 by NORD

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The holiday season is almost here! To bring seasonal cheer and remind one another that no one in the rare community fights alone, NORD will be creating and delivering care …

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Volunteer Spotlight: Dr. Kristen Kingzett

Published October 28, 2023 by NORD

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Celebrating internal medicine physicians on National Internal Medicine Day We continue to be inspired by our advocates and volunteers who drive recognition of rare disease as an urgent public health …

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Giving Rare Diseases a Voice: 5 ways to make your voice as a patient advocate heard in 2023

Published January 31, 2023 by NORD

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By Karin Hoelzer Rare disease patients and caregivers often ask me whether they should really engage in health policy. Is it really worth the trouble? In short, the answer is …

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Help for rare disease patients impacted by recent 2022 hurricanes

Published October 6, 2022 by NORD

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NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …

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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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Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Published February 17, 2022 by NORD

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Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022 February 17, 2022, …

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Request for Proposal: NORD’s 2021 Annual Report

Published February 9, 2022 by NORD

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Request for Proposal (RFP) Copy and design for NORD’s 2021 Annual Report BACKGROUND The National Organization for Rare Disorders® (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to …

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