News
October 9, 2023
FDA Issues Complete Response Letter for Patisiran for Treatment of Cardiomyopathy of ATTR Amyloidosis
BREAKING NEWS: The U.S. Food and Drug Administration has issued a complete response letter for Alnylam Pharmaceuticals' Patisiran, an investigational RNAi therapeutic for the treatment of the cardiomyopathy of transthyretin-mediated (ATTR) amyloidosis. This letter denies approval for the treatment of...
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May 3, 2023
NIH Funds First Step Towards Advancing ATTR Amyloidosis Drug Development
The NIH has awarded the Amyloidosis Research Consortium $40,000 to support the organization's Amyloidosis Forum meeting on "Advancing Drug Development in ATTR Amyloidosis in an Evolving Treatment Landscape." Formed in 2019, The Amyloidosis Forum (https://amyloidosisforum.org) has been developed through a...
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March 21, 2023
The PAC Putting Patients First
ARC has created a new Patient Advisory Committee to impact the future of amyloidosis treatment and care. As a patient led organization, our team at ARC recognizes the value and importance of engaging and understanding the experiences of patients and...
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March 10, 2023
Advocating for Amyloidosis Patients & Families at the US Congress
ARC participated in the 2023 Rare Disease Week proceedings organized by the EveryLife Foundation alongside five amyloidosis patient and family advocates and over 600 other rare disease advocates. [caption id="attachment_6173" align="aligncenter" width="900"] Amyloidosis patient advocates and ARC staff with other...
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February 1, 2023
ARC in the Field: Global Genes Health Equity Summit 2022
Special Report by: Dr. Lauren Edgar, DNP, RN, MSN-Ed., FNP Associate Director of Clinical Affairs and Education, Amyloidosis Research Consortium The 2nd Annual Global Genoese Rare Health Equity Summit in partnership with the Rare Disease Diversity Coalition took place...
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