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October 29, 2019

TOPIC: Advocacy, Events, Featured News

NORD’s Rare Action Network Mobilized for a Successful Hill Day

Posted by Laura Mullen

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a… Read More

October 23, 2019

TOPIC: Events, Featured News

2019 NORD Summit Breaks Records with Largest Attendance Ever!

Posted by Laura Mullen
Health and Human Services Secretary Alex Azar

Health and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019

 

Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit, welcoming over 900 registrants to two days of… Read More

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

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

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