Amyloidosis UK @amyloidosisuk.bsky.social · 17hThis will be of great interest to those in our community living with AA amyloidosis. Please share with anyone you know who may be affected. 000
Reposted by Amyloidosis UKMichigan United @michiganunited.bsky.social · 02/10/2026World Amyloidosis Awareness Day is later this month, but conversations about ATTR-CM should be happening every day- especially among African-American families that are at a 4x increased risk for developing the condition. Share this post to spread the word. askaboutattr.org 011
Amyloidosis UK @amyloidosisuk.bsky.social · 01/10/2026Proudly wearing their Team Tett Amyloidosis UK shirts, Phil & Martin officially completed the Compton Half Marathon on Sunday, finishing in the top 120 of nearly 300 runners! All to spread vital awareness of #amyloidosis ❤️ Follow & support Team Tett on #JustGiving www.justgiving.com/page/john-tett 000
Amyloidosis UK @amyloidosisuk.bsky.social · 28/09/2026Our next Patient Day will be in #Liverpool on November 15. This free event brings together and connects amyloidosis patients, carers & healthcare professionals while also empowering people to better manage living with their conditions. Book for free here: www.eventbrite.co.uk/e/amyloidosi...eventbrite.co.ukAmyloidosis UK Patient Day: LiverpoolLearn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026Next up for Team Tett’s #amyloidosis fundraiser: Brewood 10k & Compton Half Marathon! On Sep 20, John’s son Phil and his brother-in-law Martin tackled the Brewood 10k together. This Sunday they’re taking on the Compton Half Marathon. Wish them luck! ❤️ www.justgiving.com/page/john-tett 000
Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026This may well be of interest to our patient community… 110
Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026Thanks so much to everyone who came to our Patient Day in Glasgow on Sunday! We’ve had so much lovely feedback. The day was about bringing together & connecting amyloidosis patients, carers & healthcare professionals while also empowering people to better manage living with their conditions. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 18/09/2026Only two days until our Patient Day in Glasgow! There are still places available if you haven’t booked yet: www.eventbrite.co.uk/e/amyloidosi...eventbrite.co.ukAmyloidosis UK Patient Day: GlasgowLearn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 14/09/2026Our Glasgow Patient Day is this Sunday (Sep 20, 11am–4pm) and places are still available! This a free event bringing together amyloidosis patients, their families & carers, to connect with each other & to feel empowered to manage their condition. Register now: www.eventbrite.co.uk/e/amyloidosi...eventbrite.co.ukAmyloidosis UK Patient Day: GlasgowLearn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 03/09/2026Our amazing fundraiser John Tett, at 76 years of age living with amyloidosis, recently completed a challenge of walking 600 km in 3 months. He’s now decided to make it 1000 km in 6 months! Follow and support his journey here: www.justgiving.com/page/john-tett #justgiving #amyloidosisukjustgiving.comTeam Tett: Outwalking AmyloidosisHelp John Tett raise money to support Amyloidosis UK 000
Amyloidosis UK @amyloidosisuk.bsky.social · 31/08/2026If you know anyone in the #Glasgow area with amyloidosis, please let them know about our upcoming Patient Day: a free event for those living with #amyloidosis, their families & carers, featuring: workshops, presentations, innovative tools & organisations + more. www.eventbrite.co.uk/e/amyloidosi...eventbrite.co.ukAmyloidosis UK Patient Day: GlasgowLearn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. 011
Amyloidosis UK @amyloidosisuk.bsky.social · 24/08/2026Please pass this on to anyone living with #amyloidosis in #Scotland who is able to travel and may want to take part… 100
Amyloidosis UK @amyloidosisuk.bsky.social · 21/08/2026Our 1st Patient Day of 2026 is in #Glasgow on September 20. This a free event for people living with #amyloidosis, their families & carers, featuring: * Practical workshops * Specialist presenters * Innovative tools & organisations * Opportunities to connect www.eventbrite.co.uk/e/amyloidosi...eventbrite.co.ukAmyloidosis UK Patient Day: GlasgowLearn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 13/08/2026We’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 011
Amyloidosis UK @amyloidosisuk.bsky.social · 06/08/2026Your 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 010
Reposted by Amyloidosis UKThe Sacramento Bee @sacbee.com · 04/08/2026Lisa Ferrero was diagnosed with AL amyloidosis and multiple myeloma at age 56. After 10 years, a clinical trial of CAR-T therapy saved her life.bit.lyA Lincoln woman battled a rare disease for 10 years. How she found health and joyLisa Ferrero was diagnosed with AL amyloidosis and multiple myeloma at age 56. After 10 years, a clinical trial of CAR-T therapy saved her life. 023
Reposted by Amyloidosis UKOncoBites @oncobites.bsky.social · 05/08/2026Amyloid light chain (AL) amyloidosis is a rare blood cell disorder closely linked to blood cancers like multiple myeloma. It is tricky to diagnose, and if you haven’t heard of AL amyloidosis, you’re not alone. Cameron Van Cleave writes. oncobites.blog/2026/08/05/a...oncobites.blogAmyloidosis (AL)- A Potentially Underdiagnosed Disorder Closely Related to Blood CancerReading time: 4 minutes Cameron Van Cleave Introduction If you haven’t heard of amyloid light chain (AL) amyloidosis, you aren’t alone. According to the Amyloidosis Foundation, 4,500 new cases are … 011
Reposted by Amyloidosis UKThe Lancet @thelancet.com · 03/08/2026Once rapidly fatal diseases without approved therapeutic options, systemic amyloidoses are now highly treatable. A new Review summarises treatment advancements and future directions in systemic light chain and transthyretin amyloidosis: spkl.io/633277KhbB 0117
Amyloidosis UK @amyloidosisuk.bsky.social · 05/08/2026Last update from Team Tett for a while: “Penny absolutely smashed her triathlon! She gave it her all from start to finish, showing incredible grit, energy & determination through every single phase of the race. Team Tett could not be prouder of her massive achievement. Fantastic job, Penny! 🏊♀️🚴♀️🏃♀️🏅” 000
Amyloidosis UK @amyloidosisuk.bsky.social · 31/07/2026Latest 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 010
Amyloidosis UK @amyloidosisuk.bsky.social · 29/07/2026FYI there are more spaces for this session than previously as we’ll have more staff to help facilitate it so please do book a spot! Thursday, September 17 from 2–3:30pm. www.eventbrite.co.uk/e/cardiac-am...eventbrite.co.ukCardiac Amyloidosis (ATTR-CM) Online Support GroupAre you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 28/07/2026A 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 100
Amyloidosis UK @amyloidosisuk.bsky.social · 24/07/2026“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 000
Amyloidosis UK @amyloidosisuk.bsky.social · 22/07/2026On July 1st we joined the Parliamentary launch of "The Other Side of Heart Failure" — a vital report calling for better diagnosis and care for HFpEF and ATTR-CM patients. Too many are still waiting for answers. Read the full article here: amyloidosisuk.org/the-other-si...amyloidosisuk.orgThe Other Side of Heart Failure: A Call for Timely Diagnosis and Equitable CareAmyloidosis UK at Parliament: backing better diagnosis and care for those living with unrecognised heart failure and ATTR-CM. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 20/07/2026Our next Cardiac Amyloidosis (ATTR-CM) Online Support Group session will take place on Thursday 17 September from 2 PM – 3:30 PM GMT+1. Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne. You can reserve a space via the link below: www.eventbrite.co.uk/e/cardiac-am...eventbrite.co.ukCardiac Amyloidosis (ATTR-CM) Online Support GroupAre you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne. 000
Amyloidosis UK @amyloidosisuk.bsky.social · 17/07/2026TEAM 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 010
Amyloidosis UK @amyloidosisuk.bsky.social · 17/07/2026Allan Grover is cycling from Birmingham to London in memory of his brother Charlie, who he sadly lost to amyloidosis last year, in order to raise money for our charitable work. On behalf of all of us at Amyloidosis UK and the wider community: thank you Allan. www.justgiving.com/page/charlie...justgiving.comAllan's memorial fundraiser for Amyloidosis UKHelp Allan Grover raise money to support Amyloidosis UK 000
Amyloidosis UK @amyloidosisuk.bsky.social · 13/07/2026Latest 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 000
Amyloidosis UK @amyloidosisuk.bsky.social · 06/07/2026If you’re living with hereditary hATTR neuropathy (or know somebody else who is), we’ve launched a survey on our website to help healthcare professionals better understand what matters most to people living with hATTR and their families. Any submissions would be greatly appreciated & please share…amyloidosisuk.orgSurvey: Hand and Arm Function in hATTR Neuropathy - Amyloidosis UK 000
Amyloidosis UK @amyloidosisuk.bsky.social · 02/07/2026It 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 👏👏👏 000
Reposted by Amyloidosis UKPaul Wilczynski @paulwilczynski.bsky.social · 01/07/2026Cardiac amyloidosis used to be a quiet death sentence for older hearts. Today, new tests and drugs can slow this ‘stiff heart’ disease and help many seniors live longer, better lives. bit.ly/Cardiac_Amyl... #seniorshealth #heartdisease #cardiacamyloidosis 121
Amyloidosis UK @amyloidosisuk.bsky.social · 26/06/2026TEAM 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 000
Amyloidosis UK @amyloidosisuk.bsky.social · 25/06/2026LATEST 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 010
Amyloidosis UK @amyloidosisuk.bsky.social · 25/06/2026If 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!) 000
Amyloidosis UK @amyloidosisuk.bsky.social · 18/06/2026UPDATE 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 010
Amyloidosis UK @amyloidosisuk.bsky.social · 17/06/2026We’d like to extend a huge, heartfelt thank you to Fiona Taylor’s family and friends for their extraordinary generosity. Set up in Fiona’s memory by her family, this fundraiser has raised £2,953 that will go towards improving outcomes & quality of life for people living with amyloidosis in the UK.amyloidosisuk.enthuse.comIn memory of our lovely Wife and Mum, Fiona TaylorWe are heartbroken to announce that our beautiful Wife and Mum, Fiona, passed away on Saturday 16th May 2026. Our Mum was not only the best Mum to us, but one of the most caring and kind-hearted peopl 010
Amyloidosis UK @amyloidosisuk.bsky.social · 16/06/2026Our 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! 010
Reposted by Amyloidosis UKCardiology Advisor @cardiologyadvisor.bsky.social · 11/06/2026Substantial delays exist between an incident #HeartFailure diagnosis and a subsequent diagnosis of transthyretin #cardiac amyloidosis. www.thecardiologyadvisor.com/news/c…thecardiologyadvisor.comFactors Delaying Transthyretin Cardiac Amyloidosis DiagnosisFemale sex and specific comorbidities may increase the risk for delayed diagnosis of transthyretin cardiac amyloidosis in heart failure. 011
Amyloidosis UK @amyloidosisuk.bsky.social · 10/06/2026Join Cardiomyopathy UK for a crucial session on cutting-edge research into #cardiacamyloidosis. Dr Andrej Corovic from Cambridge Cardiovascular will be discussing the use of PET imaging to detect inflammation in ATTR amyloidosis hearts. 📅 Tue 16 June, 2-3pm GMT 🔗 Register 👇👇👇eventbrite.co.ukCatalyst Connections: Imaging inflammation in amyloidosisDr Andrej Corovic will be talking about 'Use of positron emission tomography (PET) for imaging inflammation in cardiac amyloidosis' 000
Amyloidosis UK @amyloidosisuk.bsky.social · 09/06/2026REMINDER: the next Cardiac Amyloidosis Online Support Group session is in 2 days time — Thursday June 11. Spaces are still available… 000
Reposted by Amyloidosis UKMedPage Today @medpagetoday.com · 01/06/2026Researchers unveiled a new multimodal AI algorithm for cardiac amyloidosis diagnosis, a tool showing promise for greater accuracy and sensitivity in the real world. www.medpagetoday.com/cardiology/chf…medpagetoday.comCardiac Amyloidosis Diagnosis Gets a More Extensive AI ModelClinical, lab parameters coupled with echo data in AI-ECM 141
Reposted by Amyloidosis UKJCO Journals @jco-asco.bsky.social · 29/05/2026‼️ #ASCO26 simultaneous publication by Wechalekar et al: Efficacy and Safety of Anselamimab in Immunoglobulin Light Chain (AL) Amyloidosis: Results from the Randomized CARES Trials Read the full article: bit.ly/43xGa5m 032
Reposted by Amyloidosis UKpharmaphorum @pharmaphorum.bsky.social · 01/06/2026Potential #antibodytherapies from #AstraZeneca and #Regeneron for light chain (AL) #amyloidosis had new data at #ASCO, raising the prospect of new treatments for the rare bone marrow disease. pharmaphorum.com/news/asco26-...pharmaphorum.comASCO26: Could AL amyloidosis see a new crop of therapies?Trials of AstraZeneca's anselamimab and Regeneron's Lynozyfic could deliver much-needed new therapeutic options for rare disease AL amyloidosis. 011
Amyloidosis UK @amyloidosisuk.bsky.social · 28/05/2026FYI we currently have 3 opportunities for patients & carers: 1) Sharing experiences of inherited ATTR amyloidosis (or ATTR polyneuropathy 2) Familial Amyloidosis Polyneuropathy (FAP) Columnist 3) ATTR Amyloidosis Documentary Visit our website for more details: amyloidosisuk.org/for-patients...amyloidosisuk.orgPaid & volunteering opportunities - Amyloidosis UKWe’re looking for advocates to help shine a light on the real-life challenges of living with different types of amyloidosis & help shape future support efforts. 010
Amyloidosis UK @amyloidosisuk.bsky.social · 25/05/2026A heartfelt thanks to Steven, Stephanie & Michelle for their fundraiser: “In memory of our lovely Wife and Mum, Fiona Taylor” and we’re so sorry for your loss. amyloidosisuk.enthuse.com/pf/stephanie...amyloidosisuk.enthuse.comIn memory of our lovely Wife and Mum, Fiona TaylorWe are heartbroken to announce that our beautiful Wife and Mum, Fiona, passed away on Saturday 16th May 2026. Our Mum was not only the best Mum to us, but one of the most caring and kind-hearted peopl 000
Amyloidosis UK @amyloidosisuk.bsky.social · 21/05/2026You can now reserve a space for the next Cardiac Amyloidosis (ATTR-CM) Online Support Group session on June 11. We run these sessions in collaboration with Cardiomyopathy UK. www.eventbrite.co.uk/e/cardiac-am...eventbrite.co.ukCardiac Amyloidosis (ATTR-CM) Online Support GroupAre you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne. 010
Amyloidosis UK @amyloidosisuk.bsky.social · 20/05/2026Today 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 000