Published July 26, 2023 by NORD
Delaware is the 27th state to establish a Rare Disease Advisory Council to raise awareness and inform state health policies. July 26, 2023, Dover, DE – Today, patients and families in …
Continue reading “Delaware Enacts Law to Address Needs of Rare Disease Patients and Families”
Read morePublished July 7, 2023 by NORD
Today, the National Organization for Rare Disorders (NORD) and the APS Type 1 Foundation, a NORD member organization, announced the awarding of a $50,000 grant for research into this rare …
Read morePublished June 30, 2023 by NORD
Today, the Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act’s Medicare Drug Price Negotiation Program (MDPNP). Unfortunately, today’s guidance threatens vital innovation …
Read morePublished June 27, 2023 by NORD
WASHINGTON, DC, and ALBANY, N.Y., June 27, 2023 – The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they have jointly published the galactosemia community’s first …
Read morePublished June 2, 2023 by NORD
Washington, DC, June 2, 2023 – This week, the Senate passed a debt ceiling deal (HR 3746) by a 63-36 vote and which now goes to President Biden for his …
Read morePublished May 4, 2023 by NORD
NORD announced nine new research hospitals have been designated NORD Rare Disease Centers of Excellence, joining a network of thousands of experts committed to sharing knowledge to solve the greatest …
Read morePublished February 27, 2023 by NORD
May 4 Ceremony in Washington, DC will honor rare disease innovators, advocates, and partners as part of NORD’s 40th Anniversary Celebration Washington, DC, February 27, 2023—National Organization for Rare Disorders …
Continue reading “NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration”
Read morePublished February 7, 2023 by NORD
Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community February 7, 2023, Washington, D.C. – The National …
Read morePublished August 12, 2022 by NORD
Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following …
Continue reading “NORD Statement on Passage of the Inflation Reduction Act”
Read morePublished August 3, 2022 by NORD
Wasilla, Alaska, August 3, 2022—All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety …
Continue reading “All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome”
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