Featured News Archives - NORD (National Organization for Rare Disorders)

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 Christina Jensen

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.

July 2, 2019

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Registration Open for 2019 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Christina Jensen

The time is now…

To address affordability for patients,
To drive progress with a unified voice,
To understand the role of advancing technology in rare disease, and
To register for the 2019 NORD Rare Summit!

In 2019, we believe “The Time is Now“ to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More

Tags: affordability, drug pricing, NORD Rare Summit, NORD Summit, rare disease technology, Rare Diseases & Orphan Products Breakthrough Summit

June 25, 2019

TOPIC: Featured News, Research

NORD Awards Ten New Grants in Eight Disease States for Rare Disease Research

Posted at June 6, 2019 01:03 pm by Christina Jensen

Washington, DC, June 25, 2019 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced ten new grants as part of its Rare Disease Research Grant Program, which celebrates its 30th anniversary in 2019. Research grants have been awarded to the following institutions and investigators:

June 19, 2019

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

The NORD Rare Disease Video Library Offers New Educational Resources

Posted at June 6, 2019 08:51 am by Christina Jensen

New video library launched with funding from Incyte

Washington, DC, June 19, 2019–The National Organization for Rare Disorders (NORD)^Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the… Read More

Tags: Autoimmune Polyglandular Syndrome Type 1, Essential Thrombocythemia, Incyte, NORD Rare Disease Video Library, Opsoclonus-Myoclonus Syndrome, Phenylketonuria, Polycythemia Vera, Primary Myelofibrosis, Rare Disease Database, Rare Disease Education, Rare Disease Video Library, Short Bowel Syndrome

June 18, 2019

TOPIC: Featured News, Medical, Press Releases

NORD Launches Digital Education Initiative with PlatformQ Health

Posted at June 6, 2019 09:51 am by Christina Jensen

New program by the trusted voice and leader in the rare disease community aims to increase clinician preparedness and improve the care of patients living with rare diseases

BOSTON, MA and WASHINGTON, DC, June 18, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25 to 30 million Americans living with… Read More

Tags: CME, continuing medical education, PlatformQ Health Education, Rare Disease Continuing Medical Education, Rare Disease Education, Robert Rosenbloom, Sika Dunyoh

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