Published December 17, 2020 by NORD
In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE …
Read morePublished December 16, 2020 by NORD
The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers …
Read morePublished December 9, 2020 by NORD
Natural history studies provide health care professionals and researchers with first-hand information about people living with rare diseases and give insight into how rare diseases present, progress over time and impact patients. Data sharing supports patients by helping …
Read morePublished December 3, 2020 by NORD
As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process. Patients and caregivers bring a human perspective to the drug development process …
Read morePublished November 18, 2020 by NORD
Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in …
Continue reading “NORD Launches Project RDAC, Announces Inaugural Meeting on December 16”
Read morePublished November 13, 2020 by NORD
NORD’s recent telehealth report was featured in an article in Managed Healthcare Executive, a digital magazine from MJH Life Sciences, on 11.12.2020: “The federal government took important steps to temporarily …
Continue reading “Telehealth Report from NORD Covered in Managed Healthcare Executive”
Read morePublished November 13, 2020 by NORD
At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation Charlene advocates for those affected by… STXBP1 encephalopathy Charlene is located in… San Francisco, CA …
Continue reading “Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation”
Read morePublished November 3, 2020 by NORD
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 …
Read morePublished November 2, 2020 by NORD
[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 …
Continue reading “NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease”
Read morePublished October 28, 2020 by NORD
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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