Amyloidosis: Why Your Path to Diagnosis Is Worth More to Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Amyloidosis happens when misfolded proteins build up in organs such as the heart, kidneys and nerves. Its early signs, breathlessness, swollen ankles, numb feet, carpal tunnel syndrome, look like many common problems, so diagnosis often comes late. How long it took, which signs came first, and what treatment did once it was found, is evidence research needs to diagnose it earlier, and because the disease is rare, every story counts for more.

How many people live with it

A global study estimated that in 2018, 74,000 AL amyloidosis cases worldwide were diagnosed during the preceding 20 years, with about 10 new cases per million people a year. For the ATTR form, prevalence ranged from 6.1 per million in the US to 232 per million in Portugal.

The records worth keeping

The American Society of Hematology's 2026 guideline on AL amyloidosis describes the tests that leave records:

• Blood and urine protein tests: serum and urine immunofixation electrophoresis and serum free light chains.
• A heart MRI to increase clinical suspicion of cardiac amyloidosis.
• A tissue biopsy to confirm it, starting with fat-pad sampling and a bone marrow biopsy, or a heart biopsy.

The record of the years before diagnosis, the appointments and tests for symptoms that turned out to be amyloidosis, is part of the story too. If you do not have your results, ask your haematology or cardiology service for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. Because amyloidosis is rare, a complete story with the records the guideline lists comes to about $257 per licence on the benchmark today. Why rare disease data is worth more. Every line and its source is on the amyloidosis page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

People with ATTR amyloidosis are also paid for their time directly: a published listing offered $120 for a 60-minute phone interview.

For families

Some forms of amyloidosis run in families, and many people with it are supported by a partner or an adult child. You can share the story of someone you care for, with their permission; the record then notes that a carer told it.

Start your story, or read what your health data is worth first.