Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases. The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS…
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Washington, D.C. — (June 3, 2026) — Yesterday 48 non-profit, non-partisan patient organizations issued a statement in response to the interim final rule implementing the new Medicaid work reporting requirement…
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Provided by Michael Beard, Vice President of Federal and Global Public Policy The National Organization for Rare Disorders (NORD) recognizes that the departure of the FDA Commissioner is a pivotal…
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December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS). Essential Health Benefits …
Read moreOn November 20, 2012, the Centers for Medicare and Medicaid Services (CMS) released the long-awaited proposed rules for health insurance market reforms and essential health benefits. These provisions of the …
Continue reading “Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits”
Read moreWhen I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what …
Continue reading “Barretstown – a Serious Fun Camp!”
Read moreTwo weeks ago, as my flight landed in Boston, I stepped outside of the plane with a long tube in my arm, inside of which was a very special poster. …
Continue reading “The Story Behind the Rare Disease Day School Curriculum”
Read moreAccording to a report on the BBC News web site today, the European Commission has — for the very first time anywhere in the Western world — given final approval …
Continue reading “Glybera Becomes First-ever Gene Therapy Approved in Europe”
Read moreMy friend’s 18-year-old son died recently following a 6-month battle with acute myeloid leukemia. There are many different stories I could tell about Tucker’s experience that are all too familiar …
Continue reading “Creative Collaborations May Be Key to Reducing Chemotherapy Risks”
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