Published February 7, 2025 by NORD
By Aditya Tummala, Sydney Wiredu, Derek Liu, and Pranav Ramesh Harvard College, Class of 2026 Long-time researchers in the field of rare diseases know what it’s like to experience a …
Continue reading “Hack Rare: Engaging the Next Generation of Rare Disease Innovators”
Read morePublished November 20, 2024 by NORD
By Rebecca Aune, NORD Director of Education Programs The rare disease community knows hard truths all too well. Effective treatments are scarce across the thousands of known rare diseases. With …
Continue reading “Empowering the Rare Disease Community in Drug Development: A New Path Forward “
Read morePublished October 21, 2024 by NORD
Data will be used to help improve policy, access, resources WASHINGTON, DC, October 21, 2024 – Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study, a …
Read morePublished September 30, 2024 by NORD
The National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (LYS). NORD’s Rare Disease Research Grant Program, …
Read morePublished September 27, 2024 by NORD
By Susanna Ray It took doctors several years to figure out what was wrong with Karman Kahambwe. And no wonder: the Congolese-American teenager living in Eastern Washington had …
Read morePublished August 27, 2024 by NORD
Lea este artículo in español The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national survey aimed at …
Read morePublished August 27, 2024 by NORD
Read this article in English La Organización Nacional de Enfermedades Raras (National Organization for Rare Disorders, NORD) y Rare Disease Diversity Coalition (RDDC) han dado a conocer los hallazgos de …
Read morePublished May 21, 2024 by NORD
May 21, 2024 — The National Organization for Rare Disorders (NORD), in partnership with the Tyler James Abizeid Foundation and the MMIHS Foundation, announces the awarding of two separate research …
Read morePublished May 10, 2024 by NORD
The National Organization for Rare Disorders (NORD) announced the launch of two Canadian patient registries within its IAMRARE® Program, in partnership with the Children’s Hospital of Eastern Ontario (CHEO) Research …
Continue reading “NORD Launches First Canadian Patient Registries on Its IAMRARE Platform”
Read morePublished September 1, 2023 by NORD
The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE platform. Funding is made available through the …
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