The Chily Amyloidosis Fund

AL amyloidosis (ALA) is a rare and incurable blood condition where abnormal proteins accumulate in the body, potentially destroying organs like the heart and kidneys. Some people with ALA also have multiple myeloma – a blood cancer.

While ALA is not blood cancer, it is treated similarly to myeloma. This is because both ALA and myeloma are caused by abnormal plasma cells produced in the bone marrow.

Because ALA is so rare, affecting 500-600 people in the UK each year, it has attracted far less research investment than it deserves. With your support, we can change this.

Delayed diagnosis is one of the reasons why outcomes for ALA remain poor. By the time most patients are diagnosed, significant organ damage has already occurred.

We also lack understanding of why, despite effective treatments, nearly all patients eventually relapse. New treatments and immunotherapies now offer the realistic possibility of long-term remission, so there is real momentum for developing more personalised treatments for those with ALA.

We have identified a landmark research programme based in the UK that could have a global impact on people living with or at risk of ALA.

The programme will create a new screening tool for early detection of ALA as well as answer key research questions to enable the development of more effective treatments for ALA. It will cost £3m over five years, with a proposed start date of late 2027*.

*In the event this programme doesn’t proceed, Blood Cancer UK will apply any funds towards other ALA or myeloma-related research.