People with early-stage familial amyloid polyneuropathy (FAP) cost society more than twice as much as symptom-free carriers of disease-causing genetic mutations, largely due to higher medical needs and lost productivity at work, according to a study in Spain. “Not only early-stage [FAP] patients, but also asymptomatic carriers, are generating…
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In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their caregivers. I still recall the first diagnosed patient who reached out to me after the charity was established in 2020. We’d just launched NZAPA’s Facebook…
Early genetic screening for people with unexplained nerve damage, or neuropathy, may help uncover undiagnosed cases of familial amyloid polyneuropathy (FAP), allowing faster access to treatment. In a study from France, 1% of 400 adults with neuropathy of unknown origin were found to have a FAP-causing mutation, even…
A Phase 3 clinical trial testing Intellia Therapeutics’ gene-editing therapy nexiguran ziclumeran (nex-z) in adults with familial amyloid neuropathy (FAP) is ahead of its planned enrollment schedule, with recruitment now expected to be completed in the first half of 2026. That’s according to a press release from…
Using a small sample of tissue from skin — obtained via a skin biopsy — can help diagnose familial amyloid polyneuropathy (FAP) early by looking for the presence of disease-causing toxic amyloid deposits and measuring the number of small nerve fibers in the outermost layer of a person’s skin.
Kidney disease is an underrecognized complication of hereditary transthyretin amyloidosis (ATTRv) — a group of diseases that includes familial amyloid polyneuropathy (FAP) — but may be effectively controlled with a class of medications known as siRNA therapies, among them Onpattro (patisiran) and Amvuttra (vutrisiran). That’s according to an observational study,…
Becoming educated and informed about FAP is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your FAP journey.
There is no cure for FAP yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
