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Policy

A total of 138 posts are filed under Policy
NICE Draft Guidance Says BioMarin’s ERT for Batten Disease Not Cost Effective
Rare Daily Staff The United Kingdom’s National Institute for Health and Care Excellence issued a preliminary recommendation not to… Continue Reading
Patient Groups Call on House to Reject Right to Try Act
Rare Daily Staff The National Organization for Rare Disorders along with 37 patient and provider organizations in a letter to leaders of the… Continue Reading
A Rare Cancer in Need of Congressional Recognition
Sarcoma has long been under-represented in the research landscape, in part because it represents just 1 percent of all cancers. There are… Continue Reading
U.S. Food and Drug Administration Orphan Drug Designations in January 2018
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Shire Adopts Open Access Policy for Publication of Company-Supported Research
Rare Daily Staff The rare disease drug company Shire said it has implemented a new publication policy requiring the submission of all… Continue Reading
Thoughts on the Year that Was and What Will Be
The year 2017 was one that inspired hopes in rare disease patients with the advance of innovative technologies in the pipeline that promise… Continue Reading
U.S. Food and Drug Administration Orphan Drug Designations in December 2017
The following is a list of FDA Orphan Drug designation made in December 2017… Continue Reading
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