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

Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in facing challenges brought on by the current pandemic.

NORD recently surveyed the rare disease community, collecting feedback from nearly 800 patients and caregivers on the… Read More

Tags: Sanofi Genzyme, AveXis, Vertex Pharmaceuticals, fundraising, nonprofits, rare disease nonprofits, COVID-19 Rapid Response Leadership Series, virtual platforms, crisis communications, Mallinckrodt Pharmaceuticals, Blueprint Medicines

May 19, 2020

TOPIC: Press Releases, Featured News, Research

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

Posted at May 5, 2020 09:00 am by Laura Mullen

Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational or clinical studies related to the development of new diagnostics or treatments for rare disease. Since the program’s launch in 1989, NORD grants have led… Read More

Tags: Pseudomyxoma Peritonei, Kjersti Flatmark, Oslo University Hospital, The David Ashwell Foundation, APS Type 1 Foundation, Malonic Aciduria, Boston Children's Hospital, Children's Hospital of Philadelphia, Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins, Appendix Cancer, New-Onset Refractory Status Epilepticus, NORSE, Primary Orthostatic Tremor, PMP, Autoimmune Polyglandular Syndrome Type 1, APS-1, Neuroendocrine Cell Hyperplasia of Infancy, NEHI, Febrile Infection-Related Epilepsy Syndrome, FIRES, ACDMPV, Frances Flanagan, Appendix Cancer/Pseudomyxoma Peritonei Research Foundation, Oliver S. Eng, The University of Chicago, Rachid Tazi-Ahnini, The University of Sheffield, biliary atresia, DataRevive LLC, Michael A. Pack, Perelman School of Medicine, University of Pennsylvania, Sarah A. Taylor, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University School of Medicine, The Hope Fund, Jiping Yue, NEHI Research Foundation, Joseph Shieh, University of California San Francisco, Ingo Helbig, Claude Steriade, New York University School of Medicine, Robert Chen, University Health Network, William Akers, Jr. & Georgia O. Akers Private Foundation

May 13, 2020

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

NORD to Host an Externally-led Patient-Focused Drug Development Virtual Meeting on Krabbe Disease, Thursday, October 29

Posted at May 5, 2020 02:06 pm by Laura Mullen

NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. Patients and caregivers impacted by Krabbe disease who are interested in participating at the virtual meeting as panelists should complete this Read More

Tags: FDA, Krabbe disease, Food and Drug Administration, leukodystrophy, Voice of the Patient Report, KrabbeConnect, Partners for Krabbe Research, galactocerebrosidase, GALC, lysosomal storage disorders

May 12, 2020

TOPIC: Press Releases, Featured News, Patients & Members, COVID-19

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

Posted at May 5, 2020 09:19 am by Laura Mullen

Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical Relief Program to provide vital support to members of the rare disease community affected by the COVID-19 pandemic. The program will assist those with a… Read More

Tags: Sanofi Genzyme, covid-19, premium, premiums, co-pays, limited medical assistance, COVID-19 Premium & Medical Relief Program, NORD COVID-19 resource center

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May 22, 2020

Head of the Herd: Emile Najm, KAT6A Foundation

Posted at May 5, 2020 08:46 am by Laura Mullen

May 21, 2020

NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Posted at May 5, 2020 10:04 am by Laura Mullen