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October 11, 2019

TOPIC: Featured News, Medical

NORD Posts New Addition to Video Library – Pediatric Movement Disorders: Guidance for Parents & Physicians

Posted at October 10, 2019 09:41 am by Laura Mullen

NORD has created a short video to help parents, pediatricians and others recognize early signs of pediatric movement disorders and know what to do if they suspect a child may have one. The video features Mered Parnes, MD, Director of the Pediatric Movement Disorders Clinic at Texas Children’s Hospital in an interview he conducted recently with staff from… Read More

October 10, 2019

TOPIC: Featured News, Medical

Information on current NATPARA® shortage

Posted at October 10, 2019 03:33 pm by Laura Mullen

On September 5, 2019, Takeda issued a recall of NATPARA® (parathyroid hormone), due to rubber particulates originating from the rubber septum of the NATPARA cartridge. As of October 9,  NATPARA® is in shortage.

NORD has reached out to the Food and Drug Administration (FDA) on behalf of patients who are now not able to access the… Read More

September 29, 2019

TOPIC: Events, Featured News, Medical, Patient Stories

Amish Community Testimony

Posted at September 9, 2019 07:33 am by Valaree DonFrancesco

Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20.

Written By Debbie Drell, Director of Membership, NORD

According to the NIH, more than 500 affected families have been identified with Pyruvate Kinase Deficiency (PK Deficiency) in the world, but just 140 miles north of where we sit here today, you’ll find a… Read More

September 10, 2019

TOPIC: Featured News, Medical

Students for Rare Featured Student: Jaime Tan

Posted at September 9, 2019 11:14 am by Laura Mullen

NORD’s Educational Initiatives team spoke with Jaime Tan, Central Michigan University medical student and NORD Students for Rare Chapter Leader. In this interview, Jaime talks about how he came to be involved in the rare community. For more information on NORD’s student programs, click here.

  1. Tell us a little bit about yourself! Where are you from?

My name is… Read More

July 9, 2019

TOPIC: Featured News, Medical, Patients & Members, Research

New Video on PTLD Added to NORD Rare Disease Video Library

Posted at July 7, 2019 08:34 am by Lisa Sencen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has added a new video to the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the public.

The… Read More