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Amyloidosis UK

@amyloidosisuk.bsky.social
424 followers 748 following 228 posts

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. amyloidosisuk.org

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Amyloidosis UK @amyloidosisuk.bsky.social · 17h
For those in the Phoenix AZ area…
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Amyloidosis UK @amyloidosisuk.bsky.social · 17h
This will be of great interest to those in our community living with AA amyloidosis. Please share with anyone you know who may be affected.
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Reposted by Amyloidosis UK
Michigan United @michiganunited.bsky.social · 02/10/2026
World 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 01/10/2026
Proudly 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 28/09/2026
Our 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.uk
Amyloidosis UK Patient Day: Liverpool
Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.
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Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026
Next 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026
This may well be of interest to our patient community…
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Amyloidosis UK @amyloidosisuk.bsky.social · 24/09/2026
Thanks 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.
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Amyloidosis UK @amyloidosisuk.bsky.social · 18/09/2026
Only 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.uk
Amyloidosis UK Patient Day: Glasgow
Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.
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Amyloidosis UK @amyloidosisuk.bsky.social · 14/09/2026
Our 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.uk
Amyloidosis UK Patient Day: Glasgow
Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.
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Amyloidosis UK @amyloidosisuk.bsky.social · 03/09/2026
Our 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 #amyloidosisuk
justgiving.com
Team Tett: Outwalking Amyloidosis
Help John Tett raise money to support Amyloidosis UK
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Amyloidosis UK @amyloidosisuk.bsky.social · 31/08/2026
If 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.uk
Amyloidosis UK Patient Day: Glasgow
Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.
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Amyloidosis UK @amyloidosisuk.bsky.social · 24/08/2026
Please pass this on to anyone living with #amyloidosis in #Scotland who is able to travel and may want to take part…
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Amyloidosis UK @amyloidosisuk.bsky.social · 21/08/2026
Our 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.uk
Amyloidosis UK Patient Day: Glasgow
Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.
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Amyloidosis UK @amyloidosisuk.bsky.social · 13/08/2026
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.
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Amyloidosis UK @amyloidosisuk.bsky.social · 06/08/2026
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.
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Reposted by Amyloidosis UK
The Sacramento Bee @sacbee.com · 04/08/2026
Lisa 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.ly
A Lincoln woman battled a rare disease for 10 years. How she found health and joy
Lisa 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.
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Reposted by Amyloidosis UK
OncoBites @oncobites.bsky.social · 05/08/2026
Amyloid 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.blog
Amyloidosis (AL)- A Potentially Underdiagnosed Disorder Closely Related to Blood Cancer
Reading 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 …
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Reposted by Amyloidosis UK
The Lancet @thelancet.com · 03/08/2026
Once 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
Human body with annotations showing potential organs or systems involved by AL or ATTR amyloidosis. Red colour indicates organs or systems mostly or uniquely involved by AL amyloidosis. Green colour indicates those mostly or uniquely involved by ATTRwt amyloidosis. Blue colour indicates sites of clinical presentation common to both. AL=light chain amyloidosis. ATTR=transthyretin amyloidosis. ATTRv=transthyretin amyloidosis variant. ATTRwt=transthyretin amyloidosis wild-type. *Also common in ATTRv. Copyright: 2026 Elsevier Ltd. All rights are reserved.
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Amyloidosis UK @amyloidosisuk.bsky.social · 05/08/2026
Last 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! 🏊‍♀️🚴‍♀️🏃‍♀️🏅”
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Amyloidosis UK @amyloidosisuk.bsky.social · 31/07/2026
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
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Amyloidosis UK @amyloidosisuk.bsky.social · 29/07/2026
FYI 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.uk
Cardiac Amyloidosis (ATTR-CM) Online Support Group
Are you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne.
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Amyloidosis UK @amyloidosisuk.bsky.social · 28/07/2026
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
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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
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Amyloidosis UK @amyloidosisuk.bsky.social · 22/07/2026
On 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.org
The Other Side of Heart Failure: A Call for Timely Diagnosis and Equitable Care
Amyloidosis UK at Parliament: backing better diagnosis and care for those living with unrecognised heart failure and ATTR-CM.
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Amyloidosis UK @amyloidosisuk.bsky.social · 20/07/2026
Our 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.uk
Cardiac Amyloidosis (ATTR-CM) Online Support Group
Are you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne.
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Amyloidosis UK @amyloidosisuk.bsky.social · 17/07/2026
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
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Amyloidosis UK @amyloidosisuk.bsky.social · 17/07/2026
Allan 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.com
Allan's memorial fundraiser for Amyloidosis UK
Help Allan Grover raise money to support Amyloidosis UK
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Amyloidosis UK @amyloidosisuk.bsky.social · 13/07/2026
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
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Amyloidosis UK @amyloidosisuk.bsky.social · 06/07/2026
If 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.org
Survey: Hand and Arm Function in hATTR Neuropathy - Amyloidosis UK
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Amyloidosis UK @amyloidosisuk.bsky.social · 02/07/2026
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.
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Reposted by Amyloidosis UK
Paul Wilczynski @paulwilczynski.bsky.social · 01/07/2026
Cardiac 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 26/06/2026
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
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Amyloidosis UK @amyloidosisuk.bsky.social · 25/06/2026
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.Both young men holding small fish by the canal.
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Amyloidosis UK @amyloidosisuk.bsky.social · 25/06/2026
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!)
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!)
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Amyloidosis UK @amyloidosisuk.bsky.social · 18/06/2026
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.
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Amyloidosis UK @amyloidosisuk.bsky.social · 17/06/2026
We’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.com
In memory of our lovely Wife and Mum, Fiona Taylor
We 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 16/06/2026
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.
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Reposted by Amyloidosis UK
Cardiology Advisor @cardiologyadvisor.bsky.social · 11/06/2026
Substantial delays exist between an incident #HeartFailure diagnosis and a subsequent diagnosis of transthyretin #cardiac amyloidosis. www.thecardiologyadvisor.com/news/c…
thecardiologyadvisor.com
Factors Delaying Transthyretin Cardiac Amyloidosis Diagnosis
Female sex and specific comorbidities may increase the risk for delayed diagnosis of transthyretin cardiac amyloidosis in heart failure.
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Amyloidosis UK @amyloidosisuk.bsky.social · 10/06/2026
Join 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.uk
Catalyst Connections: Imaging inflammation in amyloidosis
Dr Andrej Corovic will be talking about 'Use of positron emission tomography (PET) for imaging inflammation in cardiac amyloidosis'
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Amyloidosis UK @amyloidosisuk.bsky.social · 09/06/2026
REMINDER: the next Cardiac Amyloidosis Online Support Group session is in 2 days time — Thursday June 11. Spaces are still available…
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Reposted by Amyloidosis UK
MedPage Today @medpagetoday.com · 01/06/2026
Researchers 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.com
Cardiac Amyloidosis Diagnosis Gets a More Extensive AI Model
Clinical, lab parameters coupled with echo data in AI-ECM
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Reposted by Amyloidosis UK
JCO 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
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Reposted by Amyloidosis UK
pharmaphorum @pharmaphorum.bsky.social · 01/06/2026
Potential #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.com
ASCO26: 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.
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Amyloidosis UK @amyloidosisuk.bsky.social · 28/05/2026
FYI 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.org
Paid & volunteering opportunities - Amyloidosis UK
We’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.
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Amyloidosis UK @amyloidosisuk.bsky.social · 25/05/2026
A 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.com
In memory of our lovely Wife and Mum, Fiona Taylor
We 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
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Amyloidosis UK @amyloidosisuk.bsky.social · 22/05/2026
Just a reminder…
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Amyloidosis UK @amyloidosisuk.bsky.social · 21/05/2026
You 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.uk
Cardiac Amyloidosis (ATTR-CM) Online Support Group
Are you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne.
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Amyloidosis UK @amyloidosisuk.bsky.social · 20/05/2026
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.
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