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...
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...
ARC & ASPIRE: Partnerships for Patient-Centric Change
Earlier this month ARC announced the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact, Reach, & Equity. This initiative, independently facilitated and governed by ARC, brings together 10 different biotech & pharmaceutical companies committed to making a real impact in...
Special Report by: Dr. Johana Fajardo, DNP, ANP-BC CHFN FHFSA Infiltrative Cardiomyopathy Director, MedStar Washington Hospital Center; Chair of ARC Amyloidosis Nurse Collaborative The XVIII International Symposium on Amyloidosis (ISA) took place September 4-8, 2022 in Heidelberg, Germany. The...
New Initiative Brings Leading Life Sciences Companies Together To Drive Collective Impact in Awareness, Diagnosis, Care, and Health Equity for Patients with Amyloidosis
Today the Amyloidosis Research Consortium (ARC), a patient-led research organization for amyloidosis diseases, announces the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact Reach and Equity, a collaborative of biotech and pharmaceutical companies committed to advancing solutions, improving diagnosis...
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Dr. Meghan Beier, psychologist at the Rowan Center for Behavioral Medicine, explored the emotional aspects of amyloidosis. She discussed mental health issues in amyloidosis and present strategies for coping.