News

NICE appraisal for amyloidosis
NICE issue initial negative decisions on inotersen and patisiran
The UK’s National Institute for Health and Care Excellence (NICE) has published Evaluation Consultation Documents on its assessments of inotersen and patisiran. (more…)
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Dena Heath support group leader
14 years strong: Northern California patient support group
On October 20th the Northern California Amyloidosis Support Group celebrated it’s fourteenth year with a meeting held at Stanford’s Blake Wilbur Cancer Center. (more…)
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Tegsedi (Inotersen) approved by FDA for hATTR amyloidosis
The U.S. Food and Drug Administration today approved Tegsedi (inotersen), a novel therapy for the treatment of hereditary TTR amyloidosis polyneuropathy. (more…)
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cardiac amyloid is often misdiagnosed.
Cardiac Amyloid takes center stage at HFSA
For many years, cardiac amyloid has had a few remarkable champions, preaching to half-empty rooms at medical conferences. Well, all that has changed. (more…)
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Isabelle Lousada
ARC CEO Named 2018 Rare Champion of Hope
Earlier this month, ARC CEO, Isabelle Lousada was among a small group of honorees named 2018 RARE Champion of Hope award recipients by Global Genes. (more…)
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