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A total of 161 posts are filed under Policy
NORD Warns of Changes to Health Insurance Plans That Can Be Costly to Patients
Rare Daily Staff The National Organization for Rare Disorders is sounding the alarm on the introduction of new programs by health insurers… Continue Reading
U.S. Food and Drug Administration Orphan Drug Designations in May 2018
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A Reminder that Gene Therapies Are Not Drugs
  FDA Commissioner Scott Gottlieb this week sparked excitement that the agency is readying to release a new framework to help speed the… 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
Why Rare Disease Patients Should Worry About the Shifting Discussion from Value to Scarcity
The high cost of rare disease therapies is often discussed in isolation. When a new drug is approved for an orphan indication and an… 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
Anarchy in the U.K.
Rare disease patients in the United Kingdom face unusual barriers to accessing medicines because of the multiple review and reimbursement… Continue Reading

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