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A total of 16 posts are filed under Legislation
Kentucky Governor Vetoes Bill to Create Rare Disease Council
Rare Daily Staff Kentucky Governor Matthew Bevin vetoed a bill that would promote research, treatment, and education about rare diseases. SB… Continue Reading
House Passes Right to Try Bill
Rare Daily Staff The U.S. House of Representatives Wednesday night passed Right to Try legislation that would make it easier for patients… Continue Reading
New Report Finds States Fall Short on Policies to Help People with Rare Diseases
Rare Daily Staff States across the nation are failing to address the burden of rare diseases through legislative solutions, according to a… Continue Reading
Right-to-Try Bill Fails in the House
Rare Daily Staff Legislation intended to give patients easier access to experimental therapies without needing to go through the U.S. Food… Continue Reading
Proposed RARE Act Seeks to Address Common Challenges Rare Disease Patients Face
Rare Daily Staff Two Congressmen have introduced the Rare Disease Advancement, Research, and Education (RARE) Act, a bipartisan bill that… Continue Reading
Improving Access to Genetic Testing
About a year ago, Rep. Eric Swalwell, D-California, along with 14 other members of Congress, sent a letter to then Department of Health and… Continue Reading
Why the Tax Bill Poses A Double Threat to My Family
My son Jack spent the first four weeks of his life screaming in pain and crying from hunger. When he was two-weeks-old, the pediatrician… Continue Reading

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