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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 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

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October 10, 2019

TOPIC: Featured News, Medical

Information on current NATPARA® shortage

Posted 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

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October 10, 2019

TOPIC: Featured News

A Joint Op-Ed from NORD and Friends of Cancer Research: Despite Criticism, FDA is Doing What is Right By Rare Cancer Patients

Posted by Laura Mullen

On October 1, the first-ever Rare Cancer Day, an awareness day highlighting the challenges people living with rare cancers face and emphasizing the importance of early diagnosis, was marked by thousands nationwide. Cancer is not a singular disease but, rather, many diseases, of which several are rare. One in 5 people living with cancer in the U.S. have been… Read More

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October 4, 2019

TOPIC:

NORD Patient Assistance Program for 2020

Posted by Valaree DonFrancesco

Programs will be opening on a rolling basis. Please look out for re-enrollment communications in your email and mail this month and in coming months as we prepare for 2020.

October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Lisa’s Story

Posted by Valaree DonFrancesco

Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis of stage IV intrahepatic cholangiocarcinoma at the age of 46, we were shocked. We believed we were investigating a possible gallbladder issue. Instead, we received a call… Read More

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Alone we are rare. Together we are strong.®