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Policy

A total of 150 posts are filed under Policy
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
U.S. Food and Drug Administration Orphan Drug Designations in March 2018
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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
MHRA Grants FCS Patients in UK Early Access to Akcea’s Volanesorsen
Rare Daily Staff The U.K.’s Medicines & Healthcare products Regulatory Agency said it would allow patients with the rare genetic lipid… 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