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Title: National Organization for Rare Disorders | NORD
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NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases
NORWELL, Mass., July 31, 2026 — The National Organization for Rare Disorders (NORD®) today urged the Centers for Medicare & Medicaid Services (CMS) to revise its Interim Final Rule imple...
Additional institutions in California, New York and North Carolina strengthen a national network connecting more than 170 academic medical centers, research institutions, and children’s hospitals to advance rare disease care and research nationwide
NORWELL, Mass., July 28, 2026 — The National Organization for Rare Disorders (NORD®) today annou...
By: Anaheeta Z. Kolah
Big title, isn’t it? Most politically ambitious, life-altering laws are. Think of the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) as the Costco warehouse of laws. This federal law has everything in it related to saving money for the government, you just have to know where to look. TEFRA was one of th...
By Kathryn Blalock
My story began with a fight to survive from the very moment I was born.
Photo credit: Amanda TempleI was born with severely enlarged kidneys and polydactyly and was not expected to survive. After years of unanswered questions, I was finally diagnosed at age five with
By Kelly, Illinois
When I was 12 years old, I started experiencing unexplained weight gain, fatigue, irregular sleep patterns, brain fog, and sudden bouts of rage that felt unlike me. For years, I was told everything was normal.
Deep down, I knew something wasn’t right. For nearly 20 years, my labs would come back “normal,” and every time they d...