Published August 30, 2022 by NORD
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, …
Continue reading “Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)”
Read morePublished August 22, 2022 by NORD
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. …
Continue reading “2022 Living Rare Forum Q&A”
Read morePublished August 18, 2022 by NORD
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 …
Read morePublished August 18, 2022 by NORD
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 …
Continue reading “Solidify Your Legacy for Make a Will Month”
Read morePublished August 1, 2022 by NORD
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 …
Read morePublished May 11, 2022 by NORD
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 …
Continue reading “NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History”
Read morePublished April 25, 2022 by NORD
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, …
Continue reading “Audrey’s Story in Honor of Undiagnosed Day”
Read morePublished April 19, 2022 by NORD
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 …
Continue reading “Zane’s Diagnostic Odyssey: His Mother’s Story in Honor of Undiagnosed Day”
Read morePublished April 19, 2022 by NORD
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 …
Read morePublished April 8, 2022 by NORD
90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway April 8, 2022, Washington, DC – This week, the National Organization …
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