Rare Disease News

NORD Announces Four Patient Organizations to Join the IAMRARE Community and Submit Data to RDCA-DAP

Published March 28, 2023 by NORD

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The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the …

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Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)

Published August 30, 2022 by NORD

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Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, …

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2022 Living Rare Forum Q&A

Published August 22, 2022 by NORD

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On June 29, 2022, NORD hosted the Living Rare, Living Stronger Patient and Family Forum live in Cleveland, Ohio and simultaneously to the rare disease community virtually across the globe. …

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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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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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NORD to Host Historic FDA Meeting on Galactosemia, in Partnership with the Galactosemia Foundation

Published August 1, 2022 by NORD

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A historic, virtual meeting of the galactosemia community, FDA, and drug development leaders will be hosted on Thursday, September 1st Galactosemia is a rare, hereditary disorder that affects the body’s …

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NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History

Published May 11, 2022 by NORD

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Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community …

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Audrey’s Story in Honor of Undiagnosed Day

Published April 25, 2022 by NORD

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I am a parent of three children. Our two sons are medically complex with an unnamed syndrome. Through our parenting journey, we have faced epilepsy, autism, ADHD, global developmental delays, …

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Zane’s Diagnostic Odyssey: His Mother’s Story in Honor of Undiagnosed Day

Published April 19, 2022 by NORD

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While in uterus, Zane had an abnormally large bladder that did not drain properly; however, no diagnosis was given at that time. The doctors monitored Zane closely starting around 20 …

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The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Published April 19, 2022 by NORD

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Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research …

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