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/
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 ❤
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
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
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...
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/
Join our online community!
We’ve launched a brand new and improved forum. This is a safe space for anyone living or working with amyloidosis—from patients & family members to healthcare professionals—to discuss what’s on your minds.
amyloidosisuk.org/community/
#amyloidosis #amyloidosisawareness
We’ve launched a brand new and improved forum. This is a safe space for anyone living or working with amyloidosis—from patients & family members to healthcare professionals—to discuss what’s on your minds.
amyloidosisuk.org/community/
#amyloidosis #amyloidosisawareness
August 14, 2025 at 2:30 PM
Join our online community!
We’ve launched a brand new and improved forum. This is a safe space for anyone living or working with amyloidosis—from patients & family members to healthcare professionals—to discuss what’s on your minds.
amyloidosisuk.org/community/
#amyloidosis #amyloidosisawareness
We’ve launched a brand new and improved forum. This is a safe space for anyone living or working with amyloidosis—from patients & family members to healthcare professionals—to discuss what’s on your minds.
amyloidosisuk.org/community/
#amyloidosis #amyloidosisawareness
If you want to help raise awareness of #amyloidosis and support our charity at the same time a great way to do so is to proudly wear one of our t-shirts:
amyloidosisuk.teemill.com
amyloidosisuk.teemill.com
August 11, 2025 at 10:59 AM
If you want to help raise awareness of #amyloidosis and support our charity at the same time a great way to do so is to proudly wear one of our t-shirts:
amyloidosisuk.teemill.com
amyloidosisuk.teemill.com
Are you a woman living with wild type #amyloidosis?
We’re looking for a female volunteer to take part in a short film highlighting real experiences of life with wild type amyloidosis. This is one of a short film series made by an industry partner.
If you’re interested, email kate@amyloidosisuk.org
We’re looking for a female volunteer to take part in a short film highlighting real experiences of life with wild type amyloidosis. This is one of a short film series made by an industry partner.
If you’re interested, email kate@amyloidosisuk.org
June 25, 2025 at 10:10 AM
Are you a woman living with wild type #amyloidosis?
We’re looking for a female volunteer to take part in a short film highlighting real experiences of life with wild type amyloidosis. This is one of a short film series made by an industry partner.
If you’re interested, email kate@amyloidosisuk.org
We’re looking for a female volunteer to take part in a short film highlighting real experiences of life with wild type amyloidosis. This is one of a short film series made by an industry partner.
If you’re interested, email kate@amyloidosisuk.org
Have you been diagnosed with the v122i #amyloidosis variant?
We’re working with an industry partner to assemble a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested please email kate@amyloidosisuk.org
We’re working with an industry partner to assemble a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested please email kate@amyloidosisuk.org
June 23, 2025 at 4:04 PM
Have you been diagnosed with the v122i #amyloidosis variant?
We’re working with an industry partner to assemble a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested please email kate@amyloidosisuk.org
We’re working with an industry partner to assemble a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested please email kate@amyloidosisuk.org
Have you been diagnosed with the v122i #amyloidosis variant?
We’re working with an industry partner to bring together a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested email kate@amyloidosisuk.org
We’re working with an industry partner to bring together a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested email kate@amyloidosisuk.org
June 18, 2025 at 12:02 PM
Have you been diagnosed with the v122i #amyloidosis variant?
We’re working with an industry partner to bring together a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested email kate@amyloidosisuk.org
We’re working with an industry partner to bring together a small virtual Patient Advisory Board, specifically for people of Black African & African Caribbean heritage living with this condition.
If interested email kate@amyloidosisuk.org
We’ve arrived in Belfast! Just on our way to Derry now to participate in the #Amyloidosis Ireland Conference 2025.
We’ll do our best to share all the helpful learnings that emerge from these discussions and presentations with you upon our return.
We’ll do our best to share all the helpful learnings that emerge from these discussions and presentations with you upon our return.
June 13, 2025 at 2:15 PM
We’ve arrived in Belfast! Just on our way to Derry now to participate in the #Amyloidosis Ireland Conference 2025.
We’ll do our best to share all the helpful learnings that emerge from these discussions and presentations with you upon our return.
We’ll do our best to share all the helpful learnings that emerge from these discussions and presentations with you upon our return.
In The Path to Diagnosis: Part 2, we focus on information that will enable you to advocate for yourself (and / or your loved one) and to be actively involved in decisions about your (and / or your loved one’s) health.
We hope you find it helpful.
amyloidosisuk.org/news/the-pat...
#amyloidosis
We hope you find it helpful.
amyloidosisuk.org/news/the-pat...
#amyloidosis
April 24, 2025 at 5:08 PM
In The Path to Diagnosis: Part 2, we focus on information that will enable you to advocate for yourself (and / or your loved one) and to be actively involved in decisions about your (and / or your loved one’s) health.
We hope you find it helpful.
amyloidosisuk.org/news/the-pat...
#amyloidosis
We hope you find it helpful.
amyloidosisuk.org/news/the-pat...
#amyloidosis
Only 2 places left for our upcoming cardiac amyloidosis online support group on April 17!
Don’t worry if you can’t reserve a spot for this one, there is a waiting list as we will be hosting more in partnership with Cardiomyopathy UK.
amyloidosisuk.org/news/new-onl...
Don’t worry if you can’t reserve a spot for this one, there is a waiting list as we will be hosting more in partnership with Cardiomyopathy UK.
amyloidosisuk.org/news/new-onl...
April 2, 2025 at 7:08 PM
Only 2 places left for our upcoming cardiac amyloidosis online support group on April 17!
Don’t worry if you can’t reserve a spot for this one, there is a waiting list as we will be hosting more in partnership with Cardiomyopathy UK.
amyloidosisuk.org/news/new-onl...
Don’t worry if you can’t reserve a spot for this one, there is a waiting list as we will be hosting more in partnership with Cardiomyopathy UK.
amyloidosisuk.org/news/new-onl...
The Path to Diagnosis:
A guide to help you understand past experiences and prepare for future appointments with healthcare professionals.
Read more…
amyloidosisuk.org/news/the-pat...
#amyloidosis #diagnosis
A guide to help you understand past experiences and prepare for future appointments with healthcare professionals.
Read more…
amyloidosisuk.org/news/the-pat...
#amyloidosis #diagnosis
March 28, 2025 at 6:20 PM
The Path to Diagnosis:
A guide to help you understand past experiences and prepare for future appointments with healthcare professionals.
Read more…
amyloidosisuk.org/news/the-pat...
#amyloidosis #diagnosis
A guide to help you understand past experiences and prepare for future appointments with healthcare professionals.
Read more…
amyloidosisuk.org/news/the-pat...
#amyloidosis #diagnosis
We’re excited to announce that Amyloidosis UK has partnered with Cardiomyopathy UK to launch the first online support group specifically for individuals affected by cardiac amyloidosis.
Find out more:
amyloidosisuk.org/news/new-onl...
Find out more:
amyloidosisuk.org/news/new-onl...
March 14, 2025 at 3:34 PM
We’re excited to announce that Amyloidosis UK has partnered with Cardiomyopathy UK to launch the first online support group specifically for individuals affected by cardiac amyloidosis.
Find out more:
amyloidosisuk.org/news/new-onl...
Find out more:
amyloidosisuk.org/news/new-onl...
Amyloidosis diagnosis is often delayed, despite better tests and awareness. No matter the type or location, many face this struggle. Why?
Read more:
amyloidosisuk.org/news/the-dia...
#Amyloidosis #RareDisease
Read more:
amyloidosisuk.org/news/the-dia...
#Amyloidosis #RareDisease
March 6, 2025 at 4:52 PM
Amyloidosis diagnosis is often delayed, despite better tests and awareness. No matter the type or location, many face this struggle. Why?
Read more:
amyloidosisuk.org/news/the-dia...
#Amyloidosis #RareDisease
Read more:
amyloidosisuk.org/news/the-dia...
#Amyloidosis #RareDisease
Holistic healthcare treats the whole person, not just the disease. In #amyloidosis, combining medical care with physical, nutritional and emotional support can improve quality of life.
Read more here:
amyloidosisuk.org/news/health-...
Read more here:
amyloidosisuk.org/news/health-...
February 27, 2025 at 6:30 PM
Holistic healthcare treats the whole person, not just the disease. In #amyloidosis, combining medical care with physical, nutritional and emotional support can improve quality of life.
Read more here:
amyloidosisuk.org/news/health-...
Read more here:
amyloidosisuk.org/news/health-...
Do you live with hereditary transthyretin #amyloidosis (ATTRv) in the UK?
Please join us increasing knowledge about what it is like to live with ATTRv in the UK. Read more about our large study covering United Kingdom of Great Britain and Northern Ireland here:
amyloidosisuk.org/attrv-study/
Please join us increasing knowledge about what it is like to live with ATTRv in the UK. Read more about our large study covering United Kingdom of Great Britain and Northern Ireland here:
amyloidosisuk.org/attrv-study/
February 4, 2025 at 4:28 PM
Do you live with hereditary transthyretin #amyloidosis (ATTRv) in the UK?
Please join us increasing knowledge about what it is like to live with ATTRv in the UK. Read more about our large study covering United Kingdom of Great Britain and Northern Ireland here:
amyloidosisuk.org/attrv-study/
Please join us increasing knowledge about what it is like to live with ATTRv in the UK. Read more about our large study covering United Kingdom of Great Britain and Northern Ireland here:
amyloidosisuk.org/attrv-study/
A New Year message from Amyloidosis Alliance:
"Happy New Year from all of us at Amyloidosis Alliance! 🎉 As we step into 2025, we carry with us renewed hope and determination to advance our mission of awareness, research, and support for the amyloidosis community…"
1/3
"Happy New Year from all of us at Amyloidosis Alliance! 🎉 As we step into 2025, we carry with us renewed hope and determination to advance our mission of awareness, research, and support for the amyloidosis community…"
1/3
January 2, 2025 at 12:02 PM
A New Year message from Amyloidosis Alliance:
"Happy New Year from all of us at Amyloidosis Alliance! 🎉 As we step into 2025, we carry with us renewed hope and determination to advance our mission of awareness, research, and support for the amyloidosis community…"
1/3
"Happy New Year from all of us at Amyloidosis Alliance! 🎉 As we step into 2025, we carry with us renewed hope and determination to advance our mission of awareness, research, and support for the amyloidosis community…"
1/3
🌟 Together, we’re stronger.
The #AMYlife Survey is for everyone impacted by #amyloidosis, patients and caregivers alike.
🩺 Be part of a global initiative to improve care and recognition.
🔗 www.amyloidosisalliance.org/amylife/
#GlobalCommunity #HealthcareAdvocacy #AMYlifeSurvey #amyloidosissurvey
The #AMYlife Survey is for everyone impacted by #amyloidosis, patients and caregivers alike.
🩺 Be part of a global initiative to improve care and recognition.
🔗 www.amyloidosisalliance.org/amylife/
#GlobalCommunity #HealthcareAdvocacy #AMYlifeSurvey #amyloidosissurvey
December 20, 2024 at 1:54 PM
🌟 Together, we’re stronger.
The #AMYlife Survey is for everyone impacted by #amyloidosis, patients and caregivers alike.
🩺 Be part of a global initiative to improve care and recognition.
🔗 www.amyloidosisalliance.org/amylife/
#GlobalCommunity #HealthcareAdvocacy #AMYlifeSurvey #amyloidosissurvey
The #AMYlife Survey is for everyone impacted by #amyloidosis, patients and caregivers alike.
🩺 Be part of a global initiative to improve care and recognition.
🔗 www.amyloidosisalliance.org/amylife/
#GlobalCommunity #HealthcareAdvocacy #AMYlifeSurvey #amyloidosissurvey
🗣️ Heard from our community!
"I took the #AMYlife Survey to share my journey with amyloidosis. It felt empowering to contribute to a cause so close to my heart."
💡 You too, share your voice and help build a brighter future.
🔗 www.amyloidosisalliance.org/amylife/
#MyAmyloidosisStory #PatientVoice
December 18, 2024 at 3:21 PM
🗣️ Heard from our community!
"I took the #AMYlife Survey to share my journey with amyloidosis. It felt empowering to contribute to a cause so close to my heart."
💡 You too, share your voice and help build a brighter future.
🔗 www.amyloidosisalliance.org/amylife/
#MyAmyloidosisStory #PatientVoice
Join a global survey to make your voice heard on #amyloidosis. Amylife is an independent survey dedicated to better understanding the impact of amyloidosis on the lives of patients and their caregivers.
www.amyloidosisalliance.org/amylife/
#AMYlife #AMYlifesurvey #amyloidosissurvey
www.amyloidosisalliance.org/amylife/
#AMYlife #AMYlifesurvey #amyloidosissurvey
December 16, 2024 at 5:15 PM
Join a global survey to make your voice heard on #amyloidosis. Amylife is an independent survey dedicated to better understanding the impact of amyloidosis on the lives of patients and their caregivers.
www.amyloidosisalliance.org/amylife/
#AMYlife #AMYlifesurvey #amyloidosissurvey
www.amyloidosisalliance.org/amylife/
#AMYlife #AMYlifesurvey #amyloidosissurvey