Rare Disease News

NORD and Coalition Representing Millions of Patients Urge Policymakers to Adopt “Patient-First” Policy Agenda

Published November 3, 2020 by NORD

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NORD joined a coalition of 33 other patient organizations representing millions of people with pre-existing conditions to release our top priorities for a new administration. “The 100 Days Agenda: A …

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NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease

Published November 2, 2020 by NORD

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[carousel id=”48517″] One of the most important gatherings of the Krabbe disease community occurred in collaboration with the US Food and Drug Administration (FDA) on October 29, and it was 100% virtual with live, interactive components. FDA regulators, academic …

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NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs

Published October 28, 2020 by NORD

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Washington, DC, October 28, 2020—As part of its commitment to community engagement and organizational capacity building, the National Organization for Rare Disorders’ (NORD®) RareLaunch® training program will host two days of free workshops to take place in December, funded in part through a grant …

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RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

Published October 21, 2020 by NORD

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TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 …

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NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Published October 15, 2020 by NORD

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For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual …

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NORD and C-Path Release New Video, “RDCA-DAP: Shortening the Timeline for Developing New Treatments for Rare Diseases”

Published October 14, 2020 by NORD

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NORD and the Critical Path Institute (C-Path) are collaborating on a new initiative, the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), bringing together data from different sources, making it available for …

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Quality of Life and Butterfly Wishes

Published October 13, 2020 by NORD

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By Jill L. Pollander, RN, MSN, Director of Patient Services, NORD I first met the Juneja family several months ago. It was an amazing telephone conference call (life and work were remote by then), one that …

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NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Published October 9, 2020 by NORD

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Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted …

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Head of the Herd: Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Published October 9, 2020 by NORD

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At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society Jennifer advocates for those affected by… necrotizing enterocolitis (NEC) Jennifer is located in… Davis, …

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