Scroll
To Top

July 6, 2020

TOPIC: Featured News, Patients & Members, COVID-19

The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

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

FDA Oncology Center of Excellence Listening Session with NORD: A Patient Perspective

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

NORD’s New Genome Editing Videos Address Patient/Caregiver Questions

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

Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

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

Rare Reflections: Jacob’s Story

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.

Read More