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A total of 17 posts are filed under Healthcare
New Zealand Rare Disease Group Says NZ Government Breaks Election Promise
Rare Daily Staff The New Zealand Organisation for Rare Disorders said the New Zealand Government is failing to honor its election promise to… Continue Reading
NICE Draft Guidance Says BioMarin’s ERT for Batten Disease Not Cost Effective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
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
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
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
Measuring the Value of Therapies for Ultra-Rare Diseases
  The pricing of drugs is characterized by a tension between providing incentives to drug companies to invest in the development of… Continue Reading
Duchenne UK Collaborates with Industry to Speed Payer Value Assessments
Rare Daily Staff Duchenne UK has launched a collaboration with five pharmaceutical companies developing treatments for Duchenne muscular… Continue Reading