Rare Disease News

A Joint Op-Ed from NORD and Friends of Cancer Research: Despite Criticism, FDA is Doing What is Right By Rare Cancer Patients

Published October 10, 2019 by NORD

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On October 1, the first-ever Rare Cancer Day, an awareness day highlighting the challenges people living with rare cancers face and emphasizing the importance of early diagnosis, was marked by …

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Voices of Rare Cancer: Lisa’s Story

Published October 1, 2019 by NORD

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Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis …

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Voices of Rare Cancer: Brian’s Story

Published October 1, 2019 by NORD

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WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My …

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Voices of Rare Cancer: Susan’s Story

Published October 1, 2019 by NORD

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Hi! I’m Susan from Philadephia. My journey began in 1991 when I visited a local dermatologist for a strange rash that didn’t go away. That day changed my life. A …

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Voices of Rare Cancer: McKinnon’s Story

Published October 1, 2019 by NORD

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This is my story about NF2. This journey began when I was 16 and got hit in the head from a volleyball. I went into a routine MRI and came …

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Voices of Rare Cancer: Aidan’s Story

Published October 1, 2019 by NORD

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My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to …

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Voices of Rare Cancer: Lauren’s Story

Published October 1, 2019 by NORD

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My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody …

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Today is #RareCancerDay!

Published October 1, 2019 by NORD

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The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition®, the goal of #RareCancerDay is to raise …

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Amish Community Testimony

Published September 29, 2019 by NORD

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Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20. Written By Debbie Drell, Director of Membership, NORD According to the NIH, …

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Voices of Rare Cancer: Nicole’s story

Published September 27, 2019 by NORD

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My name is Nicole and I was diagnosed with Stage 3 sarcoma cancer in July 2017 at the age of 27. It was bizarre being diagnosed with cancer in the …

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