hATTR-PN

I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in the stillness of the day, while the household is silent, I reflect back on my week or my life in general and compose my thoughts.

Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a firm believer that mental health is a key aspect of an individual’s well-being. Providing an avenue for people to share their challenges and difficulties with…

Attralus’ imaging agent AT-01 was able to detect amyloid deposits in the heart, even in patients without heart symptoms and with normal levels of a heart damage biomarker, according to data from a Phase 1/2 clinical trial. The imaging agent was also able to distinguish between patients with…

I will always remember May 12 as a special day. That’s because last week, I spent that day with my daughter doing something close to our hearts. We woke up that morning and prepared a sign to represent our amyloidosis patient association here in New Zealand. We attended a…

Alnylam Pharmaceuticals has initiated testing of a twice a year dosing regimen for vutrisiran, its investigational RNA-targeted therapy for familial amyloid polyneuropathy (FAP) and other forms of ATTR amyloidosis. The new dosing regime is being added to the open-label extension phase of the ongoing Phase 3 HELIOS-A trial (NCT03759379) that is now underway…

It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have this opportunity as New Zealand’s Ministry of Health continues its nationwide vaccine rollout. Aubrey suffers from hereditary ATTR amyloidosis, and his condition has considerably…

Living with hereditary transthyretin amyloidosis (hATTR), a group of rare disorders that includes familial amyloid polyneuropathy (FAP), affects the quality of life for both patients and their families, a large questionnaire study in Italy found. Among the more common and practical consequences for…

Editor’s note: The Amyloidosis News Today team provided in-depth coverage of the 2021 Virtual AAN Annual Meeting, April 17–22. Go here to read the latest stories from the conference. There are roughly 2,700 people in the U.S. with hereditary transthyretin (ATTRv) amyloidosis, a group of rare disorders that also…

Note: This article was updated to include information from a Hopkins study published on May 5, 2021, of responses after a second vaccine dose was given to transplant patients. Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often…

When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis. Since his diagnosis in 2013, the disease has become more evident with each passing moment, not only in the physical sense for…