July 6, 2020
TOPIC: Featured News, Patients & Members, COVID-19
Posted at July 7, 2020 04:42 pm by Laura Mullen
During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, many patients have switched to receiving ongoing care through telehealth. Telehealth is generally described as a virtual communication used to deliver care outside of a typical or traditional health… Read More
June 24, 2020
TOPIC: Featured News, Patients & Members
Posted at June 6, 2020 08:17 am by Laura Mullen
A Note from NORD:
In May, NORD was approached by the Oncology Center of Excellence (OCE) at the US Food and Drug Administration (FDA) to collaborate on a new initiative to help enhance communication revolving around the conduct of clinical trials for rare cancer drug development during the COVID-19 pandemic.
Earlier this month, NORD, NORD’s… Read More
June 22, 2020
TOPIC: Featured News, Medical, Patients & Members
Posted at June 6, 2020 08:31 am by Laura Mullen
The newest addition to the NORD Rare Disease Video Library is a set of four videos on genome editing, a promising approach to treatment for many people affected by rare diseases. The videos address questions shared with NORD by our members and social media followers.
These short, animated videos answer basic questions such as “What is genome editing?”… Read More
June 19, 2020
TOPIC: Featured News, Patients & Members, Head of the Herd
Posted at June 6, 2020 08:25 am by Laura Mullen
At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America
Beverley advocates for those living with… sickle cell disease.
How Beverley got here…
I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a family member who is currently living with sickle cell… Read More
June 12, 2020
TOPIC: Featured News, Patients & Members, Patient Stories
Posted at June 6, 2020 08:48 am by Laura Mullen
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.