Mar 12, 2025
Through my roles as a caregiver for my late husband, Aubrey, and as an amyloidosis patient advocate, I’ve been transformed. I once assumed that my life would…
Feb 28, 2025
Any parent can relate to the stress of having a sick child. But when a child is diagnosed with a rare disease, it flips a family’s world upside down and sets them…
Feb 27, 2025
Rare Disease Day Summit highlights myositis and the 7000 other rare diseases affecting one in ten AmericansCOLUMBIA, MD, UNITED STATES, February 27, 2025 /…
Feb 19, 2025
Dr. Sarah Cuddy, cardiologist at Brigham and Women’s Hospital, explored the basics of amyloidosis. She presented an introduction to amyloidosis, the different types…
Feb 14, 2025
A CHEF diagnosed with incurable cancer has vowed to run her 600th marathon by the summer.Doctors diagnosed Brenda O’Keeffe, 48, from Co Cavan, with a rare and…
Jan 22, 2025
ARC Executive Director of Research Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis. Kristen will…
Sep 30, 2024
QUINCY, Mass., Sept. 30, 2024 /PRNewswire/ -- Today, the National Organization for Rare Disorders (NORD®) announced two new requests for proposal (RFP) for…
Sep 30, 2024
Alnylam Pharmaceuticals, Inc. News− Echocardiographic and Cardiac Biomarker Data From the HELIOS-B Study Presented Today Support the Potential of Vutrisiran in…
Sep 30, 2024
People with hereditary transthyretin amyloidosis (hATTR), a group of diseases that includes familial amyloid polyneuropathy (FAP), have significantly shorter nerve…
Sep 30, 2024
The National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (…