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June 22, 2020

TOPIC: Featured News, Medical, Patients & Members

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

Posted 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

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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 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

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June 12, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Rare Reflections: Jacob’s Story

Posted 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

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June 11, 2020

TOPIC: Featured News, Patients & Members, Industry

2020 Rare Diseases & Orphan Products Breakthrough Summit Will Be a Virtual Event, Oct. 8-9

Posted by Laura Mullen

We are at a pivotal time in rare disease, one that requires new approaches and fresh perspectives in order to achieve real progress. Given the impact of the COVID-19 pandemic on clinical trials, drug development, and pharmaceutical innovation, connecting stakeholders and advancing meaningful dialogue is now more critical than ever to improving the lives of over 25 million Americans… Read More

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June 3, 2020

TOPIC: Featured News, Patients & Members

NORD Supports the Black Community and An Equal, Inclusive, Safe, Healthy Future for All Americans

Posted by Laura Mullen

At this pivotal time, it is our duty as an organization and as global citizens to broadcast our support of people who have been systemically discriminated against, underserved and underrepresented in the United States, many of whom are part of our rare family. NORD has been fighting for the rights of all rare disease patients and families for over… Read More

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