TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Voices of Rare Cancer 2020
My name is Jan and in January 2018 life changed for my husband and me as we knew it. I was on the operating room table to have gastric sleeve surgery. I had six months of intense and detailed medical tests prior to the surgery. Imagine my shock when I woke up from surgery… Read More
TOPIC: Featured News, Advocacy, Patient Stories, Newborn Screening
September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that looks for dozens of genetic disorders in babies that are not so easily apparent at birth.
My husband Chris and I waited to have kids, enjoying the early years of… Read More
TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living… Read More
TOPIC: Featured News, Patients & Members, Patient Stories
I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This story began on May 24, 2017 at UMass Memorial Hospital in Worcester Massachusetts. I went to the emergency department with stroke-like symptoms. Life was never the same.
TOPIC: Featured News, Patients & Members, Patient Stories, Head of the Herd
Head of the Herd: Michele Sloan, Foundation to Fight H-abc
At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc
Michele most frequently checks her… Facebook page
