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November 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

New NORD Member PALS Shares About the Impact of Free Flights for the Rare Disease Community

Posted at November 11, 2019 09:51 am by Laura Mullen

Patient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog and weakness. Both were officially diagnosed in 2017, with hypophosphatasia, a metabolic bone disease. Melanie has broken multiple bones without cause or direct trauma. Jacob lost a permanent molar… Read More

October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Lisa’s Story

Posted at October 10, 2019 03:58 pm by Valaree DonFrancesco

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 a possible gallbladder issue. Instead, we received a call… Read More

October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Brian’s Story

Posted at October 10, 2019 02:47 pm by Valaree DonFrancesco

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, sat me down to explain the ins and outs… Read More

October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Susan’s Story

Posted at October 10, 2019 01:49 pm by Valaree DonFrancesco

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 a rare blood cancer that manifests in the skin…. Read More

October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: McKinnon’s Story

Posted at October 10, 2019 11:32 am by Valaree DonFrancesco

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 out with brain and spinal tumors, which lead the doctors at the time to conclude that I would be deaf by the time I graduated high school.

My experience with… Read More