Community Stories

Rare Disease Day Summit highlights myositis and the 7000 other rare diseases affecting one in ten AmericansCOLUMBIA, MD, UNITED STATES, February 27, 2025 /…

Understanding Caregiver ResponsibilitiesEmbarking on the journey of becoming a caregiver can be a complex process, particularly when it comes to live-in caregivers…

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…

As populations age, the need for informal caregivers is increasing. As individuals step up to provide care for loved ones in need, they face their own mental health…

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 (…