Published 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 …
Read morePublished February 22, 2022 by NORD
Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it …
Continue reading “Community, Action and Being Grateful: Rowan’s Rare Disease Journey”
Read morePublished February 17, 2022 by NORD
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Riann’ s journey with Cockayne Syndrome …
Continue reading “Rare Disease Day: Riaan’s Story”
Read morePublished February 9, 2022 by NORD
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Bradley’s journey with Infantile Myofibromatosis. If …
Continue reading “Rare Disease Day: Bradley’s Story”
Read morePublished February 3, 2022 by NORD
Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare …
Continue reading “NORD Gives Back: Advocacy and Action”
Read morePublished February 1, 2022 by NORD
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Yara’s journey with Jordan’s Syndrome and …
Continue reading “Rare Disease Day: Yara’s Story”
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