Research Archives - NORD (National Organization for Rare Disorders)

April 29, 2022

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Posted at April 4, 2022 01:01 pm by Rohan Narayanan

Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program

April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following rare diseases: Autoimmune Polyglandular Syndrome Type 1 (APS-1), Levy-Yeboa… Read More

Tags: FDA, research, treatment, grant, Levy-Yeboa Syndrome, Autoimmune Polyglandular Syndrome Type 1, APS-1, LYS, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, MMIHS, Jayne Holtzer Rare Disease Research Grants Program, therapy

December 20, 2021

TOPIC: Medical, Patients & Members, Research

Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Posted at December 12, 2021 08:00 am by Jennifer Huron

In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious goals, including to help to shorten the time to diagnosis, to inform and establish treatment protocols where they do not currently exist, to facilitate more equitable access to… Read More

Tags: genetic testing, research, treatment, clinical trials, medical professionals, Access, patient care, diagnostics, treatment protocols, standards of care, diagnostic odyssey, centers of excellence, patient journey, edward neilan, AI, barriers

December 17, 2021

TOPIC: Research, RDCA-DAP

The Importance of Patient Voices and Data Analytics

Posted at December 12, 2021 09:00 am by Maia Craig

NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative.

The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of what patient-focused drug development is and how the patient voice is incorporated into… Read More

Tags: research, RDCA-DAP, PFDD

December 6, 2021

TOPIC: Research, Head of the Herd

Head of the Herd: Mark Laabs, Rare Cancer Research Foundation (RCRF)

Posted at December 12, 2021 08:00 am by Maia Craig

Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.

What motivated you to start RCRF?

I am a rare cancer survivor, and I was diagnosed with ocular melanoma at the age of twenty-eight in 2012…. Read More

Tags: Cancer, research, rare cancer, rare cancer coalition, DEI, Head of the Herd

November 18, 2021

TOPIC: Press Releases, Research

The Gorlin Syndrome Alliance and NORD Launch Natural History Study for Gorlin Syndrome

Posted at November 11, 2021 09:30 am by Valaree DonFrancesco

Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that currently has no cure.

The new study, the Gorlin Syndrome Alliance Patient Registry (GSAPR), creates a platform for patients around the world to share information about Gorlin syndrome. Its purpose… Read More

Tags: NORD, rare disease, research, Registry, Gorlin Syndrome Alliance, Gorlin Syndrome

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