Rare Disease News

Solidify Your Legacy for Make a Will Month

Published August 18, 2022 by NORD

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August is national “Make a Will Month,” a critical moment for planned giving and making a lasting impact. Every adult – regardless of age – should take the time to …

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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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Rare Disease Day 2022: Advancing the Conversation Around Health Equity

Published February 18, 2022 by NORD

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The following is a guest post from Tamar Thompson, Head of Corporate Affairs, Alexion. Each year, on the last day of February, Alexion joins together with all those in the …

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Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Published December 20, 2021 by NORD

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In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious …

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Committing to Care, Access, Equity and Research: NORD Announces 31 Rare Disease Centers of Excellence

Published November 4, 2021 by NORD

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National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients Washington, DC, November 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United …

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Head of the Herd: David Arons, National Brain Tumor Society

Published September 28, 2021 by NORD

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David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …

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Martin’s Fight Against Waldenstrom Macroglobulnemia

Published September 3, 2021 by NORD

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I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My …

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NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

Published May 27, 2021 by NORD

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Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced …

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CDISC and NORD Partner to Develop Data Standards for Rare Diseases

Published April 22, 2021 by NORD

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Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare …

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NORD Expands Gene Therapy Offerings Through New Online Resources

Published April 8, 2021 by NORD

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For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare …

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