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A total of 20 posts are filed under Legislation
ACMG Call for National Policy to Control Drug Costs
ACMG Issues Policy Statement to Address Affordability of Treatments in Rare and Ultra-Rare Disorders Rare Daily Staff The American College… Continue Reading
Right-to-Try Legislation Passes House, Heads to Trump for Signature
Rare Daily Staff The U. S. House of Representatives passed legislation that would make it easier for terminally ill patients to get access… Continue Reading
Patent-to-Launch time for Orphan Drugs 2.3 Years Longer than Other Drugs, Report Finds
  Rare Daily Staff It takes 15.1 years on average to advance an orphan drug from the first patent filing to product launch—18 percent… Continue Reading
Why Patient Groups Shouldn’t Dismiss Report on Pharma Influence
Earlier this month, Kaiser Health News launched “Pre$cription for Power,” a database that tracks Big Pharma contributions to patient… Continue Reading
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

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