Amyloidosis UK
@amyloidosisuk.bsky.social
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. https://amyloidosisuk.org/community/
Pinned
Amyloidosis UK
@amyloidosisuk.bsky.social
· Sep 24
Have you tried our #amyloidosis forum?
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
Here’s one we meant to post earlier but better late than never!
Our trustees Paul & Ben were at The British Society for Heart Failure's Annual Meeting in London on 21 November, representing the #amyloidosis community ❤
Our trustees Paul & Ben were at The British Society for Heart Failure's Annual Meeting in London on 21 November, representing the #amyloidosis community ❤
December 3, 2025 at 3:24 PM
Here’s one we meant to post earlier but better late than never!
Our trustees Paul & Ben were at The British Society for Heart Failure's Annual Meeting in London on 21 November, representing the #amyloidosis community ❤
Our trustees Paul & Ben were at The British Society for Heart Failure's Annual Meeting in London on 21 November, representing the #amyloidosis community ❤
Last call for the next Cardiac Amyloidosis Online Support Group session on Thursday (Dec 4)! Spaces are still available:
www.eventbrite.co.uk/e/cardiac-am...
www.eventbrite.co.uk/e/cardiac-am...
December 2, 2025 at 12:55 PM
Last call for the next Cardiac Amyloidosis Online Support Group session on Thursday (Dec 4)! Spaces are still available:
www.eventbrite.co.uk/e/cardiac-am...
www.eventbrite.co.uk/e/cardiac-am...
We’ve got sweatshirts!
You can now order both women’s and men’s Amyloidosis UK sweatshirts in a range of options and colours. Purchasing and wearing these helps us raise awareness of amyloidosis so have a look!
amyloidosisuk.teemill.com/collection/new
You can now order both women’s and men’s Amyloidosis UK sweatshirts in a range of options and colours. Purchasing and wearing these helps us raise awareness of amyloidosis so have a look!
amyloidosisuk.teemill.com/collection/new
December 1, 2025 at 11:45 AM
We’ve got sweatshirts!
You can now order both women’s and men’s Amyloidosis UK sweatshirts in a range of options and colours. Purchasing and wearing these helps us raise awareness of amyloidosis so have a look!
amyloidosisuk.teemill.com/collection/new
You can now order both women’s and men’s Amyloidosis UK sweatshirts in a range of options and colours. Purchasing and wearing these helps us raise awareness of amyloidosis so have a look!
amyloidosisuk.teemill.com/collection/new
REMINDER: the next meeting of our Cardiac Amyloidosis (ATTR-CM) Online Support Group is Thursday December 4th.
You can reserve a space here if you haven’t already:
www.cardiomyopathy.org/ATTR-CM
You can reserve a space here if you haven’t already:
www.cardiomyopathy.org/ATTR-CM
November 26, 2025 at 3:46 PM
REMINDER: the next meeting of our Cardiac Amyloidosis (ATTR-CM) Online Support Group is Thursday December 4th.
You can reserve a space here if you haven’t already:
www.cardiomyopathy.org/ATTR-CM
You can reserve a space here if you haven’t already:
www.cardiomyopathy.org/ATTR-CM
Honestly, this talk is incredibly informative — if you’re living with #amyloidosis it is well worth a watch!
NEW VIDEO | Strength Training for Amyloidosis: Alan Levi Shares 20 Years of Insight at NZAPA 2025
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
Strength Training for Amyloidosis: Alan Levi Shares 20 Years of Insight at NZAPA 2025
YouTube video by Amyloidosis UK
youtu.be
November 18, 2025 at 12:41 PM
Honestly, this talk is incredibly informative — if you’re living with #amyloidosis it is well worth a watch!
Reposted by Amyloidosis UK
Precise evaluation with routine cardiac diagnosis can help identify patients with wild-type transthyretin amyloidosis (#ATTR) who have a high risk of mortality.
Read here: https://bit.ly/3XlAWGH
#RareDisease #TransthyretinAmyloidosis #Cardiology
Read here: https://bit.ly/3XlAWGH
#RareDisease #TransthyretinAmyloidosis #Cardiology
QRS Duration May Be a Marker for Survival in Wild-Type ATTR
Precise evaluation with routine cardiac diagnosis can help identify patients with wild-type ATTR who have a high risk of mortality.
bit.ly
November 11, 2025 at 6:11 PM
Precise evaluation with routine cardiac diagnosis can help identify patients with wild-type transthyretin amyloidosis (#ATTR) who have a high risk of mortality.
Read here: https://bit.ly/3XlAWGH
#RareDisease #TransthyretinAmyloidosis #Cardiology
Read here: https://bit.ly/3XlAWGH
#RareDisease #TransthyretinAmyloidosis #Cardiology
Reposted by Amyloidosis UK
New article in Imaging Insights: Pan-Amyloid Tracers Coming! How Will They Change the Landscape?
"Imagers could soon have new radiotracers for diagnosing not just TTR #amyloidosis but also AL and the 18 other known types of systemic amyloid."
Read now👉 bit.ly/4pcbhfN
"Imagers could soon have new radiotracers for diagnosing not just TTR #amyloidosis but also AL and the 18 other known types of systemic amyloid."
Read now👉 bit.ly/4pcbhfN
November 13, 2025 at 4:17 PM
New article in Imaging Insights: Pan-Amyloid Tracers Coming! How Will They Change the Landscape?
"Imagers could soon have new radiotracers for diagnosing not just TTR #amyloidosis but also AL and the 18 other known types of systemic amyloid."
Read now👉 bit.ly/4pcbhfN
"Imagers could soon have new radiotracers for diagnosing not just TTR #amyloidosis but also AL and the 18 other known types of systemic amyloid."
Read now👉 bit.ly/4pcbhfN
NEW VIDEO | Strength Training for Amyloidosis: Alan Levi Shares 20 Years of Insight at NZAPA 2025
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
Strength Training for Amyloidosis: Alan Levi Shares 20 Years of Insight at NZAPA 2025
YouTube video by Amyloidosis UK
youtu.be
November 10, 2025 at 7:41 PM
NEW VIDEO | Strength Training for Amyloidosis: Alan Levi Shares 20 Years of Insight at NZAPA 2025
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
Alan Levi is a seasoned personal trainer & strength coach. Having trained under some of the best coaches in the world he’s committed to sharing their techniques with others.
youtu.be/AdaU0OOGvHg
The Consilium Scientific Team are excited to announce the launch of the RareCare National Survey. This aims to gather real-world experiences to help shape future policy on diagnosis, care, treatment and support for those affected by rare conditions.
Find out more:
amyloidosisuk.org/the-rarecare...
Find out more:
amyloidosisuk.org/the-rarecare...
The RareCare National Survey
The Consilium Scientific Team have launched the RareCare National Survey, a key part of their work to evaluate & improve rare disease services in England
amyloidosisuk.org
November 7, 2025 at 1:53 PM
The Consilium Scientific Team are excited to announce the launch of the RareCare National Survey. This aims to gather real-world experiences to help shape future policy on diagnosis, care, treatment and support for those affected by rare conditions.
Find out more:
amyloidosisuk.org/the-rarecare...
Find out more:
amyloidosisuk.org/the-rarecare...
Enrolment in the MAGNITUDE & MAGNITUDE-2 trials of nex-z (NTLA-2001) has been temporarily paused after one participant experienced serious liver-related side effects, triggering the study’s built-in safety protections.
Enrolled participants remain under close monitoring.
arci.org/magnitudehold/
Enrolled participants remain under close monitoring.
arci.org/magnitudehold/
ATTR Amyloidosis MAGNITUDE Clinical Trials Temporarily on Hold
On October 27, 2025, Intellia Therapeutics temporarily paused enrollment in its MAGNITUDE and MAGNITUDE-2 trials after one participant ...
arci.org
October 31, 2025 at 11:52 AM
Enrolment in the MAGNITUDE & MAGNITUDE-2 trials of nex-z (NTLA-2001) has been temporarily paused after one participant experienced serious liver-related side effects, triggering the study’s built-in safety protections.
Enrolled participants remain under close monitoring.
arci.org/magnitudehold/
Enrolled participants remain under close monitoring.
arci.org/magnitudehold/
When we talk about #Amyloidosis, some types are so rare that even doctors may not know them. Yet, they deeply impact those affected.
ALECT2
AGel (Gelsolin)
AFib (Fibrinogen)
ALect2
These rare forms exist but remain underdiagnosed. More awareness means better care.
#WorldAmyloidosisDay
ALECT2
AGel (Gelsolin)
AFib (Fibrinogen)
ALect2
These rare forms exist but remain underdiagnosed. More awareness means better care.
#WorldAmyloidosisDay
October 27, 2025 at 3:05 PM
When we talk about #Amyloidosis, some types are so rare that even doctors may not know them. Yet, they deeply impact those affected.
ALECT2
AGel (Gelsolin)
AFib (Fibrinogen)
ALect2
These rare forms exist but remain underdiagnosed. More awareness means better care.
#WorldAmyloidosisDay
ALECT2
AGel (Gelsolin)
AFib (Fibrinogen)
ALect2
These rare forms exist but remain underdiagnosed. More awareness means better care.
#WorldAmyloidosisDay
🗓️ October 26th is World #Amyloidosis Day
A global day to raise awareness, 💬 speak out and 🤝 support patients everywhere.
📣 Save the date and help us spread the word! 🌍🧡
#WorldAmyloidosisDay #AmyloidosisAwareness #SupportAndGive #RareButReal
A global day to raise awareness, 💬 speak out and 🤝 support patients everywhere.
📣 Save the date and help us spread the word! 🌍🧡
#WorldAmyloidosisDay #AmyloidosisAwareness #SupportAndGive #RareButReal
October 24, 2025 at 1:02 PM
🗓️ October 26th is World #Amyloidosis Day
A global day to raise awareness, 💬 speak out and 🤝 support patients everywhere.
📣 Save the date and help us spread the word! 🌍🧡
#WorldAmyloidosisDay #AmyloidosisAwareness #SupportAndGive #RareButReal
A global day to raise awareness, 💬 speak out and 🤝 support patients everywhere.
📣 Save the date and help us spread the word! 🌍🧡
#WorldAmyloidosisDay #AmyloidosisAwareness #SupportAndGive #RareButReal
Just a reminder for those in the Midlands or within striking distance to register for our Amyloidosis Info Day on November 2!
Come join us at the Midlands Patient & Family Event — an afternoon of learning & support for people living with amyloidosis.
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
October 14, 2025 at 3:48 PM
Just a reminder for those in the Midlands or within striking distance to register for our Amyloidosis Info Day on November 2!
Come join us at the Midlands Patient & Family Event — an afternoon of learning & support for people living with amyloidosis.
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
October 10, 2025 at 8:14 PM
Come join us at the Midlands Patient & Family Event — an afternoon of learning & support for people living with amyloidosis.
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
Sunday, 2nd Nov · 1–6pm
Edgbaston Park Hotel, Birmingham
Find out more & register here:
www.eventbrite.com/e/midlands-a...
Reposted by Amyloidosis UK
The call for applications is now open for the ISA 2026–2027 Fellowship Program. This initiative supports clinical training in all types of amyloidosis, preparing the next generation of leaders in the field.
1/2
1/2
October 10, 2025 at 8:32 AM
The call for applications is now open for the ISA 2026–2027 Fellowship Program. This initiative supports clinical training in all types of amyloidosis, preparing the next generation of leaders in the field.
1/2
1/2
Reposted by Amyloidosis UK
At #IMS25, we spoke with Gareth Morgan, who provided practical advice to support earlier recognition and diagnosis of #amyloidosis.🩸
Click here to watch:
👉 buff.ly/iPaNSjm 👈
@myeloma-society.bsky.social #HemOnc #BloodSky #HemeSky #MedSky
Click here to watch:
👉 buff.ly/iPaNSjm 👈
@myeloma-society.bsky.social #HemOnc #BloodSky #HemeSky #MedSky
October 1, 2025 at 10:02 AM
At #IMS25, we spoke with Gareth Morgan, who provided practical advice to support earlier recognition and diagnosis of #amyloidosis.🩸
Click here to watch:
👉 buff.ly/iPaNSjm 👈
@myeloma-society.bsky.social #HemOnc #BloodSky #HemeSky #MedSky
Click here to watch:
👉 buff.ly/iPaNSjm 👈
@myeloma-society.bsky.social #HemOnc #BloodSky #HemeSky #MedSky
In case you missed it: we’re releasing a series of exercise videos specifically aimed at people living with amyloidosis. So far we have two that focus on upper and lower body workouts. The next ones are due to arrive very soon.
www.youtube.com/playlist?lis...
www.youtube.com/playlist?lis...
Living with amyloidosis: exercises and workouts - YouTube
Workouts & exercises for people living with amyloidosis to help manage living with their condition.
www.youtube.com
September 29, 2025 at 5:00 PM
In case you missed it: we’re releasing a series of exercise videos specifically aimed at people living with amyloidosis. So far we have two that focus on upper and lower body workouts. The next ones are due to arrive very soon.
www.youtube.com/playlist?lis...
www.youtube.com/playlist?lis...
Would you like to share your story of living with #amyloidosis?
One of the most helpful things for our community of patients & carers are the stories that others have shared with us about their amyloidosis journeys.
If you’d like to share yours please get in touch:
amyloidosisuk.org/contact-us/
One of the most helpful things for our community of patients & carers are the stories that others have shared with us about their amyloidosis journeys.
If you’d like to share yours please get in touch:
amyloidosisuk.org/contact-us/
Contact Us - Amyloidosis UK
Send us a message
amyloidosisuk.org
September 26, 2025 at 6:21 PM
Would you like to share your story of living with #amyloidosis?
One of the most helpful things for our community of patients & carers are the stories that others have shared with us about their amyloidosis journeys.
If you’d like to share yours please get in touch:
amyloidosisuk.org/contact-us/
One of the most helpful things for our community of patients & carers are the stories that others have shared with us about their amyloidosis journeys.
If you’d like to share yours please get in touch:
amyloidosisuk.org/contact-us/
Reposted by Amyloidosis UK
#PedSky #MedSky #EpiSky #policysky #polisky #neuroskyence #neurosci #PainResearch 🧪🛟💊
More success for gene therapy approaches, this time for Hereditary transthyretin amyloidosis with polyneuropathy, an extremely painful deadly disease affecting peripheral nerves.
#ScienceSaves
More success for gene therapy approaches, this time for Hereditary transthyretin amyloidosis with polyneuropathy, an extremely painful deadly disease affecting peripheral nerves.
#ScienceSaves
Presented at #ATTR:
Gillmore and colleagues report 24-month results from a phase 1 study of nexiguran ziclumeran, a CRISPR gene-editing approach to treating hereditary transthyretin amyloidosis with polyneuropathy. Full study results: nej.md/46Qhur7
#MedSky #NeuroSky #Genetics
Gillmore and colleagues report 24-month results from a phase 1 study of nexiguran ziclumeran, a CRISPR gene-editing approach to treating hereditary transthyretin amyloidosis with polyneuropathy. Full study results: nej.md/46Qhur7
#MedSky #NeuroSky #Genetics
September 25, 2025 at 2:06 PM
#PedSky #MedSky #EpiSky #policysky #polisky #neuroskyence #neurosci #PainResearch 🧪🛟💊
More success for gene therapy approaches, this time for Hereditary transthyretin amyloidosis with polyneuropathy, an extremely painful deadly disease affecting peripheral nerves.
#ScienceSaves
More success for gene therapy approaches, this time for Hereditary transthyretin amyloidosis with polyneuropathy, an extremely painful deadly disease affecting peripheral nerves.
#ScienceSaves
Reposted by Amyloidosis UK
New study finds transthyretin cardiac amyloidosis (ATTR-CA) is a major, underdiagnosed cause of heart failure in older Black adults, with 17% of men ≥ 75 years affected. #HeartFailure #Cardiology
ATTR-CA Identified as Major Cause of Heart Failure in Older Black Adults | HCPLive
In a study, the prevalence of transthyretin cardiac amyloidosis reached 17% in Black men over 75 years old.
www.hcplive.com
September 25, 2025 at 11:00 PM
New study finds transthyretin cardiac amyloidosis (ATTR-CA) is a major, underdiagnosed cause of heart failure in older Black adults, with 17% of men ≥ 75 years affected. #HeartFailure #Cardiology
Reposted by Amyloidosis UK
From echo clues to targeted therapy, this article distills what matters now in amyloidosis care—faster recognition, fewer missed diagnoses, better outcomes for complex patients.
September 26, 2025 at 5:59 PM
From echo clues to targeted therapy, this article distills what matters now in amyloidosis care—faster recognition, fewer missed diagnoses, better outcomes for complex patients.
Our Charity Coordinator Kate represented us at the Midlands Amyloidosis Service (MAS) Network Launch Meeting on Friday in Birmingham.
MAS looks to extend the reach of expert #amyloidosis care in the UK beyond the National Amyloidosis Centre. We were there as a patient charity to update the network.
MAS looks to extend the reach of expert #amyloidosis care in the UK beyond the National Amyloidosis Centre. We were there as a patient charity to update the network.
September 25, 2025 at 12:26 PM
Our Charity Coordinator Kate represented us at the Midlands Amyloidosis Service (MAS) Network Launch Meeting on Friday in Birmingham.
MAS looks to extend the reach of expert #amyloidosis care in the UK beyond the National Amyloidosis Centre. We were there as a patient charity to update the network.
MAS looks to extend the reach of expert #amyloidosis care in the UK beyond the National Amyloidosis Centre. We were there as a patient charity to update the network.
Have you tried our #amyloidosis forum?
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
September 24, 2025 at 1:53 PM
Have you tried our #amyloidosis forum?
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
It takes time to build a community so we hope you’ll join us to share your advice & stories with each other and ask questions.
It is 100% free, secure and safe space — all of your posts are only visible to registered users.
amyloidosisuk.org/community/
Reposted by Amyloidosis UK
Transthyretin cardiac amyloidosis is the leading cause of HF in older Black patients, particularly for men, and screening with nuclear imaging should be more frequent for this population, based on findings from the SCAN-MP study. www.tctmd.com/news/transth...
Transthyretin Cardiac Amyloidosis a Common Cause of HF in Older Black Patients
With effective therapies available, the findings suggest screening with nuclear imaging should be more frequent in this population.
www.tctmd.com
September 21, 2025 at 12:58 PM
Transthyretin cardiac amyloidosis is the leading cause of HF in older Black patients, particularly for men, and screening with nuclear imaging should be more frequent for this population, based on findings from the SCAN-MP study. www.tctmd.com/news/transth...
REMINDER: this Thursday (Sept 11) is the next session of our Cardiac Amyloidosis (ATTR-CM) Online Support Group.
We run the group in conjunction with Cardiomyopathy UK and it is one of a kind in the UK!
Reserve a spot here, it is 100% free:
www.eventbrite.co.uk/e/cardiac-am...
We run the group in conjunction with Cardiomyopathy UK and it is one of a kind in the UK!
Reserve a spot here, it is 100% free:
www.eventbrite.co.uk/e/cardiac-am...
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.
www.eventbrite.co.uk
September 9, 2025 at 2:59 PM
REMINDER: this Thursday (Sept 11) is the next session of our Cardiac Amyloidosis (ATTR-CM) Online Support Group.
We run the group in conjunction with Cardiomyopathy UK and it is one of a kind in the UK!
Reserve a spot here, it is 100% free:
www.eventbrite.co.uk/e/cardiac-am...
We run the group in conjunction with Cardiomyopathy UK and it is one of a kind in the UK!
Reserve a spot here, it is 100% free:
www.eventbrite.co.uk/e/cardiac-am...