Amyloidosis UK

@amyloidosisuk

We are a small, growing charity run by and for amyloidosis patients. We aim to bring the amyloidosis community together and to provide information and support to anyone living in the UK who is affected by amyloidosis.

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Amyloidosis UK@amyloidosisuk· 7d

We’re hosting 2 Patient Days in the UK this year! #Glasgow on 20 September #Liverpool on 15 November Learn how to live better with #amyloidosis. These are free events for people living with amyloidosis, their families and carers. Register now: www.eventbrite.co.uk/o/amyloidosi... #amyloidosisuk

Amyloidosis UK Patient Days 2026: Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. Glasgow:Sunday 20th September. Liverpool: Sunday 15th November. There will be workshops to help your journey with amyloidosis, specialist amyloidosis presenters, a marketplace of tools, organisations and innovations, and the opportunity to connect with others touched by amyloidosis. For more information and to register, scan the QR Code or email info@amyloidosisuk.org.

Amyloidosis UK@amyloidosisuk· 14d

Your Word of the Day Is: Axonopathy Axonopathy is damage to the nerve fibres that carry signals through your body. When they break down, messages slow or stop, affecting movement, sensation, and organ function. In #amyloidosis, amyloid deposits can cause this directly. #amyloidosisuk

Your Word of the Day is Axonopathy. Axons are the long, slender fibres that carry signals between your nerve cells and the rest of your body. Axonopathy is when those fibres are injured or begin to break down, and the messages that your nervous system relies on (telling your muscles to move, your organs to function, etc) can slow, distort, or stop reaching their destination altogether.

In amyloidosis, this can happen when amyloid deposits press on or infiltrate the nerves directly. It helps explain many of the sensory and physical symptoms that can feel so unsettling and hard to describe. Axonopathy is the fundamental neurological hallmark of ATTRv-PN.

Amyloidosis UK@amyloidosisuk· 20d

Latest from #TeamTett: ”Penny’s taking on her 1st ever triathlon! On Saturday 1st August she’ll be tackling: 150m swim, 4k bike, 2.5k run. All to raise vital awareness of #amyloidosis in support of Grandad John. We’re so proud of her! ❤️” www.justgiving.com/page/john-tett #amyloidosisuk #justgiving

Amyloidosis UK@amyloidosisuk· 23d

A HUGE congratulations to John Tett for completing his challenge of walking 600 km in 3 months to raise awareness of amyloidosis and funds for our charity! For a 76 year old living with amyloidosis this is an incredible achievement. Follow & support Team Tett here www.justgiving.com/page/john-tett

Amyloidosis UK@amyloidosisuk· 27d

“Phoebe smashed her 10 in 10 challenge last Saturday! Between 6am–3pm she covered 11.7km at an average pace of 5:35/km. Phoebe’s taking on these huge challenges to raise vital awareness & funds for #amyloidosis to support her Grandad.❤️” Follow & support Team Tett: www.justgiving.com/page/john-tett

Amyloidosis UK@amyloidosisuk· Jul 17

TEAM TETT UPDATE: "Our amazing 8-year-old Phoebe is taking on a massive mission for Team Tett this weekend: 10 x 1 km runs across 10 hours! She’s running to raise vital awareness for Amyloidosis UK in honour of her grandad, John. Please show her your support!" www.justgiving.com/page/john-tett

Amyloidosis UK@amyloidosisuk· Jul 13

Latest update from the amazing Team Tett: “CHALLENGE COMPLETED! Pippa smashed it! She swam all 106 lengths (1.327 miles) in just 50 mins & 51 secs! We cheered her on for every single length ❤️” Well done Pippa! 👏👏 Please support the Tett family’s JustGiving fundraiser: justgiving.com/page/john-tett

Amyloidosis UK@amyloidosisuk· Jul 2

It isn’t every day that we find ourselves in the Houses of Parliament but Wednesday was one of those days! Our CEO Kate Taylor & Director of Engagement and External Affairs Karen Davies engaged with loads of MPs and now have agreement from several of them to help support our work 👏👏👏

Our CEO Kate Taylor & Director of Engagement and External Affairs Karen Davies standing in front of Big Ben in London.

Amyloidosis UK@amyloidosisuk· Jun 26

TEAM TETT UPDATE: “Dad has now smashed through 420km! Today’s a very special milestone. Dad’s tackling his longest walk yet, around Harpenden—the town where he happily grew up & lived for 58 years. Thanks to everyone donating & following Team Tett. ❤️” www.justgiving.com/page/john-tett

Amyloidosis UK@amyloidosisuk· Jun 25

LATEST FROM TEAM TETT: "🏁 Supporting Grandad & his Amyloidosis UK fundraiser, George & Jack smashed their gruelling 12 hour Fishing Challenge, landing a massive 57 fish + 1 eel! Thanks to everyone who supported the lads today—we’re so proud of you both! ⏱️🐟🏆👏” www.justgiving.com/page/john-tett

John holding tiny fish in one hand with grandson in front of him, both smiling.

Both young men holding small fish by the canal.

The whole Tett family together on the canal, celebrating the completion of the 12 hour fishing challenge.

Amyloidosis UK@amyloidosisuk· Jun 25

If you are struggling with the heat today, here are a few tips to help keep you cool: 1) Stay well hydrated 2) Avoid alcohol & caffeine 3) Eat smaller, lighter meals 4) Have a tepid bath or shower 5) Keep a cool water spray next to you 6) Go to the cinema (with air conditioning!)

Amyloidosis UK@amyloidosisuk· Jun 18

UPDATE FROM TEAM TETT: “🎣 In support of Grandad, George is tackling a gruelling 12-Hour Fishing Challenge along Brewood Canal to raise vital awareness for Amyloidosis UK. Please share to help spread the word! Good luck George, we’re right behind you! ⏱️🐟” www.justgiving.com/page/john-tett

Team Tett: Casting to Reel In Amyloidosis — George’s 12-hour fishing challenge. 12 hours, one man, one cause. Dedicated to Grandad John Tett, see our JustGiving page and story.

Amyloidosis UK@amyloidosisuk· Jun 16

Our CEO Kate Taylor & Director of Engagement and External Affairs Karen Davies are representing our charity today at the opening event for Alnylam’s first international office in Maidenhead. Here they are with Lord Vallance, Minister of State for Science, Research & Innovation of the UK!

People shown from left to right: Amyloidosis UK CEO Kate Taylor, Minister of State for Science, Research and Innovation of the United Kingdom Lord Vallance, Director of Engagement and External Affairs Karen Davies.

Amyloidosis UK@amyloidosisuk· May 20

Today is Clinical Trials Day! We’re proud to spotlight the National Amyloidosis Centre for their work testing new & existing treatments for various types of #amyloidosis. Accurate diagnosis & swift treatment are vital — outcomes depend on both. #ClinicalTrialsDay #CTD2026 #ResearchRising

On Clinical Trials Day, Clinical Researchers Rise Together.

Amyloidosis UK@amyloidosisuk· May 12

Amyloidosis UK@amyloidosisuk· May 7

The Amyloidosis UK team are proud to celebrate Clinical Trials Day on May 20. We join a global wave of appreciation for both the clinical research workforce and the volunteer participants whose partnership makes medical discoveries possible. #ClinicalTrialsDay #CTD2026 #ResearchRising

On May 20, we celebrate the science that saves lives with the 2026 Clinical Trials Day.

Amyloidosis UK@amyloidosisuk· Apr 29

This #HFAW, we’re supporting the British Society for Heart Failure in highlighting the importance of accurate coding. Consistent heart failure coding across all four nations is essential for early identification, optimal treatment and improved patient outcomes. Learn more: www.bsh.org.uk/hfaw-2026

Coding isn't optional it is life saving. HEART FAILURE SNOMED CODES:

HFrEF: 703272007
HFmrEF: 788950000
HFpEF: 446221000

www.bsh.org.uk
@info@bsh.org.uk

Amyloidosis UK@amyloidosisuk· Apr 28

Your Word of the Day is… Mid-regional Pro-adrenomedullin (MR-proADM) A biomarker produced by the heart in response to stress & disease. In #amyloidosis, recent studies show that elevated levels are associated with greater disease severity & poorer outcomes in ATTR-CM, offering doctors new insight.

Your Word of the Day is Mid-regional Pro-adrenomedullin (MR-proADM): a naturally occurring molecular biomarker produced by the heart in response to stress and disease. In amyloidosis, recent studies show that elevated levels are associated with greater disease severity and poorer outcomes in ATTR-CM (cardiac amyloidosis), offering doctors valuable prognostic insight beyond conventional biomarkers like NT-proBNP.

Amyloidosis UK@amyloidosisuk· Apr 27

We’re proud to support the British Society for Heart Failure this #HFAW. This year’s theme, “Awareness Today, Protection Tomorrow”, highlights the importance of early diagnosis and timely treatment to improve outcomes for people living with heart failure. Explore more here: www.bsh.org.uk/hfaw-2026

Heart Failure Awareness Week: 27 April – 3 May 2026. Proudly supporting the European Heart Failure Awareness campaign less by the ESC Heart Failure Association. Awareness today, protection tomorrow.

Amyloidosis UK@amyloidosisuk· Apr 22

Your Word of the Day is… Serum Free Light Chain Assay A highly sensitive blood test that measures the levels of free light chain molecules circulating in the bloodstream. This can be a crucial early tool in diagnosing and monitoring AL amyloidosis.

Your Word of the Day is Serum Free Light Chain Assay: a highly sensitive blood test that measures the levels of free light chain molecules — small proteins naturally produced by plasma cells — circulating in the bloodstream. In amyloidosis, an abnormal ratio or elevated levels of these light chains can indicate that plasma cells are behaving irregularly, making it a crucial early tool in diagnosing and monitoring AL amyloidosis.

Amyloidosis UK@amyloidosisuk· Apr 20

Your Word of the Day is… Proteinuria An abnormal condition where detectable levels of protein molecules leak into the urine, indicating that the kidney's filtering system is under stress. In #amyloidosis, proteinuria serves as an important biomarker that signals kidney involvement.

Your Word of the Day is Proteinuria: an abnormal condition in which detectable levels of protein molecules leak into the urine, indicating that the kidney's filtering system is under stress. In amyloidosis, proteinuria serves as an important biomarker that signals kidney involvement, helping doctors assess the extent of organ damage and monitor how the disease is progressing.

Amyloidosis UK@amyloidosisuk· Apr 16

Your Word of the Day is… Mass Spectrometry A highly sensitive analytical technique that identifies molecules by measuring their mass & chemical characteristics. In #amyloidosis, it is used on tissue samples to identify which type of amyloid protein is present, enabling more accurate diagnosis…

Your Word of the Day is Mass Spectrometry: a highly sensitive analytical technique that identifies molecules by measuring their mass and chemical characteristics. In amyloidosis, it is used on tissue samples to precisely identify which type of amyloid protein is present, giving doctors a definitive foundation for accurate diagnosis and targeted treatment.

Amyloidosis UK@amyloidosisuk· Apr 14

Your Word of the Day is… Echocardiogram A simple, painless scan that uses sound waves to create detailed images of your heart’s structure and movement. In amyloidosis, it helps doctors spot changes in heart structure and function that may suggest protein build-up.

Amyloidosis UK@amyloidosisuk· Apr 10

Your Word of the Day is… Biomarker A naturally occurring molecule, gene, or bodily characteristic that helps identify a disease or physiological process. In #amyloidosis, biomarkers like troponin give doctors a measurable window into how organs are being affected and how well treatment is working.

Amyloidosis UK@amyloidosisuk· Apr 9

Your Word of the Day is… Macroglossia A condition where the tongue becomes abnormally enlarged. It can make eating, speaking and swallowing more difficult. Macroglossia is the most common oral manifestation of amyloidosis, occurring most frequently in AL amyloidosis.

Amyloidosis UK@amyloidosisuk· Apr 9

George Symes is running the Paris Marathon 2026 on April 12 to raise money for our charity in memory of his Grandad Bryan, who sadly passed away from #amyloidosis last year. Thank you George, we think you’re amazing! NB George’s JustGiving page is still open: www.justgiving.com/page/george-...

Amyloidosis UK@amyloidosisuk· Apr 8

Your Word of the Day is… Congo red stain A special dye used on tissue samples (biopsies) that makes amyloid deposits glow apple-green under polarised light, helping doctors to diagnose amyloidosis.

Amyloidosis UK@amyloidosisuk· Apr 7

Your Word of the Day is… Proteomic profiling Proteomic profiling analyses your body’s proteins to build a complete picture of what’s happening at a molecular level. It can help clinicians find answers that other tests may have missed. In amyloidosis, this helps pinpoint exactly which type you have

Your Word of the Day is Proteomic profiling. Proteomic profiling analyses your body’s proteins to build a complete picture of what is happening at a molecular level. It can uncover the unique protein patterns that many rare diseases leave behind, helping clinicians find answers that other tests may have missed. In amyloidosis, this helps pinpoint exactly which type you have.

Amyloidosis UK@amyloidosisuk· Apr 6

Your Word of the Day is... Myeloma A blood cancer caused by abnormal plasma cells produced in the bone marrow—the same cells that cause AL amyloidosis, which is why both conditions are treated similarly. Myeloma accounts for 15% of UK blood cancers & 2% of all UK cancers.

Your Word of the Day is Myeloma, aka multiple myeloma, a blood cancer caused by abnormal plasma cells produced in the bone marrow. These are the same abnormal cells that cause AL amyloidosis and both conditions are therefore treated similarly. There are over 33,000 people living with myeloma in the UK, accounting for 15% of blood cancers and 2% of all cancers. It is also one of numerous haematological conditions known to have caused AA amyloidosis.

Amyloidosis UK@amyloidosisuk· Apr 3

Your Word of the Day is… Posology A branch of medical science dealing with the dose or quantity of medicines that needs to be administered to a patient to achieve the desired therapeutic effect.