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Archives for: September 4th, 2020

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

Written by Valaree DonFrancesco on October 10, 2019

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 thousands nationwide. Cancer is not a singular disease but, rather, many diseases, of which several are rare. One in 5… Read More

Voices of Rare Cancer: Lisa’s Story

Written by Valaree DonFrancesco on October 1, 2019

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 of stage IV intrahepatic cholangiocarcinoma at the age of 46, we were shocked. We believed we were investigating… Read More

Voices of Rare Cancer: Brian’s Story

Written by Valaree DonFrancesco on October 1, 2019

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 name is Brian. It was December 2016 and my doctor at Moffitt Cancer Center in Tampa Florida, Dr. David Sallman,… Read More

Voices of Rare Cancer: Susan’s Story

Written by Valaree DonFrancesco on October 1, 2019

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 biopsy was taken and I was told I had a rare form of lymphoma called cutaneous T-cell, mycosis fungoides.

CTCL/MF is… Read More