Category: Advocacy

ARC CEO Named Representative of Patient Engagement Collaborative
To strengthen patient involvement, the U.S. Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) announced the launch of the Patient Engagement Collaborative (PEC). (more…)
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ICER Report
ARC Provides Vital Feedback for Evaluation of New hATTR Treatments
The Institute of Clinical and Economic Review (ICER), is an independent organization that seeks to improve healthcare value by providing comprehensive clinical and cost-effectiveness analyses of treatments. (more…)
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Rare Disease Week
2018 Rare Disease Week on Capitol Hill
Every year around Rare Disease Day (February 28th), The EveryLife Foundation hosts Rare Disease Week on Capitol Hill. The event aims to bring together the rare disease community to educate them federal legislative issues and give them the chance to...
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Rare Disease Week Logo
Can’t Attend Rare Disease Week? Five Ways to Participate Remotely
Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness...
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Greg Foster
Olympic Athlete Greg Foster Struggles to Find Accurate Diagnosis
At Age 57, Retired American hurdler, Olympic Silver-medalist, and 4-time world champion in the 110-meter hurdles, Greg Foster, was diagnosed with AL Amyloidosis. Below, he recounts his long journey to finding a diagnosis. In early 2016, I was diagnosed at...
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