Rare Disease News

NORD’s Response to the House Passage of the Build Back Better Act

Published November 19, 2021 by NORD

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Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 …

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The Gorlin Syndrome Alliance and NORD Launch Natural History Study for Gorlin Syndrome

Published November 18, 2021 by NORD

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Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that …

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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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Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

Published November 1, 2021 by NORD

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Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care Washington, DC – November 1, 2021 – Today, more than 230 organizations sent …

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NORD Response to New Draft of the Build Back Better Act

Published October 29, 2021 by NORD

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The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft …

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NIH, FDA and 15 private organizations join forces to increase effective gene therapies for rare diseases

Published October 27, 2021 by NORD

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October 27, 2021 – The National Institutes of Health, U.S. Food and Drug Administration, 10 pharmaceutical companies and five non-profit organizations have partnered to accelerate development of gene therapies for …

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Record-Setting NORD Breakthrough Summit Welcomes Nearly 1,000 Members of the Rare Disease Community

Published October 21, 2021 by NORD

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Two days of insightful and engaging speakers, sessions, and networking at the most important event in rare disease saw record-breaking attendance October 21, 2021 – This week, the National Organization for Rare Disorders (NORD®) hosted the virtual Rare Diseases and Orphan Products …

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Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Published September 29, 2021 by NORD

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Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is …

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NORD Welcomes Aliza Fink, D.Sc. as Director of Research Programs

Published September 23, 2021 by NORD

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Washington, DC, September 23, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of …

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Tatton Brown Rahman Syndrome Community and NORD® Launch Natural History Study of Tatton Brown Rahman Syndrome (TBRS)

Published September 22, 2021 by NORD

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Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety …

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