Research Archives - NORD (National Organization for Rare Disorders)

January 23, 2020

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

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Posted at January 1, 2020 02:29 pm by Laura Mullen

Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key stakeholders, and first-of-its-kind testimony from the heavily impacted Amish… Read More

Tags: FDA, Foundation for Rare Blood Diseases, NORD, Peter L. Saltonstall, Pyruvate Kinase Deficiency, SZB, U.S. Food and Drug Administration, Voice of the Patient

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.

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 Lisa Sencen

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 Lisa Sencen

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 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members, Press Releases, Research

NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Posted at June 6, 2019 05:33 am by Lisa Sencen

Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders

Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the estimated 30 million Americans living with… Read More

Tags: Brent Clough, FDA, Food and Drug Administration, IAMRARE, Janet Woodcock MD, natural history study, Natural History Study Data, NORD, NORD registry community, patient registry, patient registry data, Peter L. Saltonstall, The Power of Patients, The Power of Patients: Informing Our Understanding of Rare Diseases, Trio Health

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