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623,744 Results for "national organization for rare disorders".
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Press Releases
National Organization for Rare Disorders (NORD®) Issues New Report on Life-Saving Newborn Screening Programs
February 11, 2025
·
3 min read
Press Releases
Tracey Sikora Joins the National Organization for Rare Disorders (NORD®) as Vice President of Research & Clinical Programs
December 12, 2024
·
3 min read
Pharming to be honored as Industry Innovator at National Organization for Rare Disorders (NORD®) 2024 Rare Impact Awards
Pharming Group N.V. is pleased to announce its recognition as an Industry Innovator by the National Organization for Rare Disorders at the Rare Impact Awards on June 8, 2024.
April 24, 2024
·
8 min read
Press Releases
National Organization for Rare Disorders (NORD) Launches the Living Rare Study - First to Measure Full Scope of Rare Disease Challenges
October 22, 2024
·
3 min read
Genetown
National Organization for Rare Disorders (NORD) Releases Annual State Report Card, Revealing Trends in Rare Disease Health Care Coverage
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.
March 6, 2024
·
4 min read
Press Releases
National Organization for Rare Disorders (NORD) Announces $85,000 in Grant Funding for Amyloidosis and Levy-Yeboa Syndrome
October 1, 2024
·
2 min read
Rare diseases
How SpringWorks Took Pfizer’s Rare Disease Ghost Drug and Got It to Patients
SpringWorks Therapeutics sprung out of Pfizer’s storeroom, when a rare disease advocacy group pushed to keep a program for neurofibromatosis alive. This method could work for “every rare disease under the sun,” advocates say.
February 26, 2025
·
5 min read
·
Annalee Armstrong
BioCapital
National Organization for Rare Disorders Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development
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.
October 16, 2023
·
4 min read
Press Releases
GC Biopharma Shares Research Updates on Rare Disorder Drugs at the WORLD Symposium 2025
February 11, 2025
·
3 min read
Approvals
Mirum Establishes Liver Expertise With First FDA Nod for ‘Very Rare’ Disease
Ctexli’s approval further entrenches Mirum as a leader in rare liver diseases, alongside its cornerstone product Livmarli and upcoming drug volixibat.
February 24, 2025
·
2 min read
·
Tristan Manalac
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