hATTR-PN

At some point in life, most people will go through some form of surgery, including those with rare diseases like familial amyloid polyneuropathy (FAP). You may need surgery due to an injury caused by an accident, or your disease may reach a point where surgery, like an organ transplant,…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

In focus groups, transthyretin (ATTR) amyloidosis patients and families reported challenges and concerns related to the odyssey of getting a diagnosis, the effect of symptoms on quality of life, and the familial impact of the rare inherited disease. The study, which included people with…

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…

Familial amyloid polyneuropathy (FAP) is a rare condition that can affect the heart, other organs, and the nervous system due to the buildup of protein clumps called amyloid deposits. Moderate exercise can help to improve your physical and mental health. Benefits of exercise for FAP patients Exercise is widely…

The levels of blood GDF-15 could detect the development and progression of heart disease in people with hereditary transthyretin (ATTRv) amyloidosis, which includes familial amyloid polyneuropathy, a new study suggests. The study, “Plasma growth differentiation factor 15: a novel tool to detect early changes of hereditary transthyretin amyloidosis,”…

Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it was a good read, as it reinforced the importance of staying well to be able to care for a spouse who is afflicted with…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

People with familial amyloid polyneuropathy (FAP) are likely to undergo procedures that require some form of anesthesia, which can carry extra risks for these patients. Here is some information about the different types of anesthesia, and potential complications for people with FAP. What is anesthesia? Anesthesia involves the use…

Investigating how plasma from people with transthyretin (ATTR) amyloidosis affects heart cells from rats may help researchers predict future heart-related health events and deaths in these patients, a study suggests. The findings were published in Clinical Research in Cardiology, in the study “Impaired in vitro growth response…