Research Archives - NORD (National Organization for Rare Disorders)

June 22, 2020

TOPIC: Press Releases, Featured News, Research

NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities

Posted at June 6, 2020 08:57 am by Valaree DonFrancesco

Washington, DC, June 22, 2020 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, today announced the availability of three new funding opportunities to support the study of two rare diseases. The initial application deadline is August 25, 2020.

NORD’s Jayne Holtzer Rare Disease Research Grants Program… Read More

Tags: Vanessa Boulanger, Appendix Cancer and Pseudomyxoma Peritonei, Neuroendocrine Cell Hyperplasia of Infancy, covid-19, NORD’s Jayne Holtzer Rare Disease Research Grants Program

June 2, 2020

TOPIC: Featured News, Patients & Members, Research

New video from NORD and C-Path addresses the question: “What is a Registry?”

Posted at June 6, 2020 09:20 am by Laura Mullen

What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value in registries and why patients and patient organizations should participate in… Read More

Tags: Rare Diseases, Registry, patient registry, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, C-Path, Critical Path Institute, patient organizations

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 7, 2020

TOPIC: Featured News, Patients & Members, Research, COVID-19

Infographic Illustrates Effects of the COVID-19 Pandemic on Rare Disease Patients and Families

Posted at May 5, 2020 02:42 pm by Laura Mullen

NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington, DC, and multiple disease categories, including genetic conditions, primary… Read More

Tags: NORD, National Organization for Rare Disorders, covid-19, infographic, pandemic, Community Survey Report

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