National Organization for Rare Disorders
55 Kenosia Avenue
Danbury
Connecticut
06810
United States
Tel: 203-744-0100
Fax: 203-263-9938
Website: https://rarediseases.org/
86 articles about National Organization for Rare Disorders
-
National Organization for Rare Disorders (NORD) Releases Annual State Report Card, Revealing Trends in Rare Disease Health Care Coverage
3/6/2024
The National Organization for Rare Disorders released its annual State Report Card, which grades each U.S. state on critical issues impacting access to care for the 1 in 10 Americans living with a rare disease.
-
National Organization for Rare Disorders Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development
10/16/2023
The National Organization for Rare Disorders launched a new education series in English and Spanish titled, "Rare Disease Drug Development: What Patients and Advocates Need to Know," designed to help patients and patient advocacy groups understand the drug development process.
-
Coalition to Cure Calpain 3 in Partnership with the National Organization for Rare Disorders (NORD®) Launches LGMD2A/Calpainopathy Registry
9/21/2023
Coalition to Cure Calpain 3 in partnership with the National Organization for Rare Disorders launched a study with global reach to research Calpainopathy, a rare form of muscular dystrophy that causes progressive muscle weakness and wasting.
-
National Organization for Rare Disorders Announces More Than $100,000 in Grant Funding Available for Rare Disease Research
9/19/2023
The National Organization for Rare Disorders announced three new grant funding opportunities related to the following rare diseases: Arteriovenous Malformation, Levy-Yeboa Syndrome, and Megacystis Microcolon Intestinal Hypoperistalsis Syndrome.
-
Mallinckrodt Recognized as Industry Innovator at National Organization for Rare Disorders (NORD) 2023 Rare Impact Awards
5/5/2023
Mallinckrodt plc is pleased to announce it has received an award from the NORD, recognizing it as an "Industry Innovator" for the creation of a treatment "to improve the lives of rare disease patients." Mallinckrodt is being recognized for the U.S. FDA approval of TERLIVAZ® for injection for the treatment of adults with HRS with rapid reduction in kidney function.
-
Zevra Therapeutics Reiterates Commitment to Rare Disease Community as New Corporate Council Member of the National Organization for Rare Disorders (NORD)
2/28/2023
Zevra Therapeutics, Inc. announced that it has become a Corporate Council member of the National Organization for Rare Disorders and reiterated its commitment to the rare disease community by celebrating Rare Disease Day 2023.
-
National Experts Available for Rare Disease Day: February 28, 2023
2/23/2023
February 28th marks Rare Disease Day – a day designated to driving awareness and change for the more than 25 million Americans and 300 million people worldwide living and struggling with a rare disease.
-
NORD's State Report Card Shows Progress for Rare Disease Patients, Highlights Remaining Barriers
2/7/2023
The National Organization for Rare Disorders published the latest edition of its annual State Report Card, which for the past eight years has rated all 50 states and the District of Columbia on important issues affecting the more than 25 million Americans living with a rare disease.
-
NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics
8/18/2022
The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year – will be hosted on October 17 and 18, 2022 in Washington, DC.
-
Enzyvant Receives 2022 Rare Impact Industry Innovation Award from the National Organization for Rare Disorders (NORD) for Novel, Tissue-Based Therapy to Treat Ultra-Rare, Life-Threatening Pediatric Condition
6/27/2022
Enzyvant announced it is among the National Organization for Rare Disorders 2022 Industry Innovation Awards recipients for the development and U.S. Food and Drug Administration approval of RETHYMIC®, a one-time regenerative tissue-based therapy for pediatric congenital athymia.
-
Connecticut Establishes a Permanent Rare Disease Advisory Council
5/24/2022
Yesterday, Governor Ned Lamont signed House Bill 5500 into law which includes provisions to establish a permanent Rare Disease Advisory Council in the state of Connecticut.
-
NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research
4/29/2022
The National Organization for Rare Disorders announced three new requests for proposal for grant funding related to the following rare diseases: Autoimmune Polyglandular Syndrome Type 1, Levy-Yeboa Syndrome, and Megacystis Microcolon Intestinal Hypoperistalsis Syndrome.
-
Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits
3/3/2022
The National Organization for Rare Disorders released a dynamic new resource to educate healthcare nonprofit and advocacy leaders on how a lack of diversity, equity, and inclusion is affecting marginalized groups in the rare disease community.
-
NORD Welcomes Aliza Fink, D.Sc. as Director of Research Programs
9/23/2021
The National Organization for Rare Disorders, the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Aliza Fink, D.Sc. as the new Director of Research Programs.
-
Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program
9/15/2021
The Rare Disease Cures Accelerator-Data and Analytics Platform initiative officially launched its next phase on Tuesday establishing itself as the leading platform to accelerate rare disease treatment innovation.
-
Breaking Down Data Siloes: New Analytics Platform Sparks Opportunity for Rare Disease Field
9/1/2021
For two years, Critical Path Institute, the National Organization for Rare Disorders and the U.S. Food and Drug Administration have joined with others throughout the rare disease community to create a novel, best-in-class platform to accelerate rare disease treatment innovation.
-
National Organization for Rare Disorders (NORD) Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer
5/27/2021
New position reflects NORD's commitment to advancing research and improving medical outcomes for the millions of Americans living with rare diseases
-
National Organization for Rare Disorders (NORD) Announces Kay Holcombe as New Board Chair and Dennis Jackman as New Member of its Board of Directors
5/18/2021
The National Organization for Rare Disorders announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined as a new Board member.
-
CDISC and NORD Partner to Develop Data Standards for Rare Diseases
4/22/2021
CDISC and the National Organization for Rare Disorders (NORD ® ) have announced a partnership to develop global data standards for rare diseases. The data standards will be released in a Therapeutic Area User Guide that will be available at no cost on the CDISC website for researchers to leverage in studies to maximize data’s full potential.
-
New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars
3/25/2021
The National Organization for Rare Disorders announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases.