Community Stories

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…

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…

Rare Disease Day Summit highlights myositis and the 7000 other rare diseases affecting one in ten AmericansCOLUMBIA, MD, UNITED STATES, February 27, 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…

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…

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…

QUINCY, Mass., Sept. 30, 2024 /PRNewswire/ -- Today, the National Organization for Rare Disorders (NORD®) announced two new requests for proposal (RFP) for…

Alnylam Pharmaceuticals, Inc. News− Echocardiographic and Cardiac Biomarker Data From the HELIOS-B Study Presented Today Support the Potential of Vutrisiran in…

People with hereditary transthyretin amyloidosis (hATTR), a group of diseases that includes familial amyloid polyneuropathy (FAP), have significantly shorter nerve…

The National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (…