Amyloidosis Research Consortium

Research programs:arc has been working on a number of Research initiatives including datasharing, and patient experience studies. Arc has also developed an appointment companion tool that supports patients throughout their treatment journey. The anonymized aggregated data provides valuable real world incites. Arc is developing a patient reported outcomes tool for use in clinical practice.

Healthcare professional education:arc has carried out Research to understand the barriers and pathways to early diagnosis. From this Research, arc developed and implement targeted solutions. Arc raises awareness and provides physician education on the signs, symptoms, and care of Amyloidosis to raise the level of suspicion, improve the speed of diagnosis, and standards of care. Arc held a masterclass for physicians and nurses in dallas, tx focused on addressing the challenges of accurate diagnosis and managing care. Arc has published peer reviewed consensus guidelines defining pathway for suspicion and diagnosis with a focus on cardiology and general practice. Arc sponsored a satellite symposium at the hfsa conference on the diagnosis and treatment of cardiac Amyloidosis.

Awareness, educational programs and advocacy:arc's patient and healthcare professional programs educate physicians and tailor information to suit the patient's needs and are successfully matching them to better treatment centers, care, and clinical trials. Arc's patient advisory board are instrumental in defining and prioritizing arc's patient programs. Arc's patient support specialist provides information and guidance for patients throughout their journey. Arc also maintains a comprehensive website with the latest information and news about Amyloidosis. Arc's unique Amyloidosis pathfinder tool supports patients in finding and evaluating treatment centers and matching them with clinical trials. This tool has been further enhanced to support patients with telehealth visits and virtual care during the pandemic. Arc also hosts arc talks, a regular patient educational webinar series covering a range of important topics. Arc has developed booklets, and handouts to provide patients with in depth information on Amyloidosis related topics.