To Top

May 11, 2022

TOPIC: Patients & Members, Patient Stories

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

Posted at May 5, 2022 08:17 am by Rohan Narayanan

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 and the last known gathering involved less than a dozen patients and caregivers, pre-pandemic. When NORD learned of interest in this disease to share patient and caregiver stories… Read More

April 25, 2022

TOPIC: Patients & Members, Patient Stories

Audrey’s Story in Honor of Undiagnosed Day

Posted at April 4, 2022 12:05 pm by Julie Ostroff
Two young boys playing outside leaning on a rock

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, factor XI deficiency, hypoglycemia due to a suspected congenital disorder of glycosylation (CDG), severe reflux, dysphagia, rare surgical complications, as well as subtotal villous atrophy, splenomegaly, and enlarged abdominal… Read More

April 19, 2022

TOPIC: Patients & Members, Patient Stories

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

Posted at April 4, 2022 10:00 am by Julie Ostroff
Lisa in a Running For Rare tank top with her son Zane who is wearing a blue shirt

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 weeks. He was suspected of having megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS) in December of 2012 at six days old. Genetic testing began in January 2013, and official results… Read More

April 8, 2022

TOPIC: Press Releases, Patients & Members, Advocacy

ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval 

Posted at April 4, 2022 09:15 am by Rohan Narayanan

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 for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and Human Services (HHS) Secretary Xavier Becerra andRead More

April 4, 2022

TOPIC: Patients & Members, Rare Disease Day

Rare Disease Day and the Spotlight on NORD Member Organizations

Posted at April 4, 2022 08:30 am by Rohan Narayanan

Rare Disease Day Recap

Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD is proud to partner with EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases… Read More