Rare Disease News

NORD CEO Statement on Rare Cancer Day

Published September 30, 2025 by NORD

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Today, on Rare Cancer Day, I am proud to recognize the 30 organizations that make up the NORD Rare Cancer Coalition. Rare cancers are part of the family of more …

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From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials

Published September 30, 2025 by NORD

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By Melinda Bachini of the Cholangiocarcinoma Foundation In April 2012, I walked into the National Cancer Institute (NCI) as Patient 3737. While not being called by my name may be …

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Guest Blog: The Power of the Pack — New Rare Cancer Initiative Hopes Collaboration Will Lead to Cures

Published September 27, 2024 by NORD

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By Susanna Ray It took doctors several years to figure out what was wrong with Karman Kahambwe. And no wonder: the Congolese-American teenager living in Eastern Washington had …

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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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Rare Disease News

NORD CEO Statement on Rare Cancer Day

From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials

Guest Blog: The Power of the Pack — New Rare Cancer Initiative Hopes Collaboration Will Lead to Cures

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

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