Published December 9, 2024 by NORD
QUINCY, Mass., December 9, 2024 – The National Organization for Rare Disorders (NORD) has named Kelly Esperias, EdD, MBA, CFRE, Chief Strategy & Operations Officer. Esperias, who previously served as …
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
Council will advise and advocate on the needs of California’s rare disease community SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that …
Read morePublished September 24, 2024 by NORD
September 24, 2024 The National Organization for Rare Disorders (NORD) applauds the House of Representatives for passing the Give Kids a Chance Act, a major step toward providing more opportunities …
Read morePublished September 18, 2024 by NORD
WASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids a Chance Act (H.R. 3433), …
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 May 1, 2024 by NORD
QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She succeeds Peter L. Saltonstall who announces …
Read morePublished April 22, 2024 by NORD
The National Organization for Rare Disorders (NORD) will honor a distinguished group of individuals and industry leaders for their contributions to help improve the lives of more than 30 million …
Read morePublished April 16, 2024 by NORD
Since NORD launched Project RDAC in 2020, Mississippi becomes the 28th state to establish an RDAC to better focus public policy efforts for people living with rare diseases. JACKSON, MS, …
Read morePublished October 16, 2023 by NORD
Series available in English and Spanish – Created in partnership with the FDA and Critical Path Institute Today, the National Organization for Rare Disorders (NORD) launched a new education series …
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