The Heart Hive
@thehearthive.bsky.social
A place to connect people with #cardiomyopathy and #myocarditis with researchers
www.thehearthive.org
www.thehearthive.org
🔊 The Heart Hive Cardiomyopathy study is now open to people living in the UK with a known genetic risk of cardiomyopathy, even if they don’t have a diagnosis.
👉 Learn more at thehearthive.org.
👉 Learn more at thehearthive.org.
November 6, 2025 at 11:05 AM
🔊 The Heart Hive Cardiomyopathy study is now open to people living in the UK with a known genetic risk of cardiomyopathy, even if they don’t have a diagnosis.
👉 Learn more at thehearthive.org.
👉 Learn more at thehearthive.org.
🔊 We’ve added a new study to the Heart Hive!
Researchers at the University of Oxford are using cutting-edge MRI scans of the heart to better understand how the heart changes in early hypertrophic cardiomyopathy. 👉 Email jack.bell@magd.ox.ac.uk for more information.
Researchers at the University of Oxford are using cutting-edge MRI scans of the heart to better understand how the heart changes in early hypertrophic cardiomyopathy. 👉 Email jack.bell@magd.ox.ac.uk for more information.
October 31, 2025 at 10:16 AM
🔊 We’ve added a new study to the Heart Hive!
Researchers at the University of Oxford are using cutting-edge MRI scans of the heart to better understand how the heart changes in early hypertrophic cardiomyopathy. 👉 Email jack.bell@magd.ox.ac.uk for more information.
Researchers at the University of Oxford are using cutting-edge MRI scans of the heart to better understand how the heart changes in early hypertrophic cardiomyopathy. 👉 Email jack.bell@magd.ox.ac.uk for more information.
A team at the University of the West of England (UWE Bristol) are exploring views on the use of questionnaires to assess the palliative care needs of people with heart failure. To take part in an online or telephone interview, email harley.anderson@uwe.ac.uk or complete this form 👉 bit.ly/3WRYtPm.
October 23, 2025 at 10:17 AM
A team at the University of the West of England (UWE Bristol) are exploring views on the use of questionnaires to assess the palliative care needs of people with heart failure. To take part in an online or telephone interview, email harley.anderson@uwe.ac.uk or complete this form 👉 bit.ly/3WRYtPm.
Up to 80% of the Heart Hive community has never taken part in heart research before.
We want as many people as possible have the opportunity to help with studies that will change the future of cardiomyopathy and myocarditis care.
👉 Learn more at thehearthive.org.
We want as many people as possible have the opportunity to help with studies that will change the future of cardiomyopathy and myocarditis care.
👉 Learn more at thehearthive.org.
August 14, 2025 at 9:05 AM
Up to 80% of the Heart Hive community has never taken part in heart research before.
We want as many people as possible have the opportunity to help with studies that will change the future of cardiomyopathy and myocarditis care.
👉 Learn more at thehearthive.org.
We want as many people as possible have the opportunity to help with studies that will change the future of cardiomyopathy and myocarditis care.
👉 Learn more at thehearthive.org.
Our community is made up of people from all across the UK (and beyond), with genetic samples collected through the post - no travel needed.
We want research to be accessible to everyone, regardless of where you live.
👉 Learn more thehearthive.org.
We want research to be accessible to everyone, regardless of where you live.
👉 Learn more thehearthive.org.
July 30, 2025 at 9:15 AM
Our community is made up of people from all across the UK (and beyond), with genetic samples collected through the post - no travel needed.
We want research to be accessible to everyone, regardless of where you live.
👉 Learn more thehearthive.org.
We want research to be accessible to everyone, regardless of where you live.
👉 Learn more thehearthive.org.
Last week we went to the Cardiomyopathy UK Midlands HCP Study Day to share what we’re doing with specialists from across the UK.
Thank you to everyone who has been helping us to open up research to more people, and to all the Heart Hivers who have given up their time to take part in research ❤
Thank you to everyone who has been helping us to open up research to more people, and to all the Heart Hivers who have given up their time to take part in research ❤
July 24, 2025 at 11:24 AM
Last week we went to the Cardiomyopathy UK Midlands HCP Study Day to share what we’re doing with specialists from across the UK.
Thank you to everyone who has been helping us to open up research to more people, and to all the Heart Hivers who have given up their time to take part in research ❤
Thank you to everyone who has been helping us to open up research to more people, and to all the Heart Hivers who have given up their time to take part in research ❤
✅ You can join the Heart Hive if you have a family history of cardiomyopathy, or if you’ve had a genetic test revealing an inherited risk for cardiomyopathy, even if you haven’t been diagnosed yourself.
Find out more at 👉 thehearthive.org.
Find out more at 👉 thehearthive.org.
July 3, 2025 at 9:15 AM
✅ You can join the Heart Hive if you have a family history of cardiomyopathy, or if you’ve had a genetic test revealing an inherited risk for cardiomyopathy, even if you haven’t been diagnosed yourself.
Find out more at 👉 thehearthive.org.
Find out more at 👉 thehearthive.org.
The Heart Hive is hosting a study to learn more about cardiomyopathy. We’re looking for people with HCM, DCM, ACM and Takotsubo in the UK, aged 18 and over.
We’re asking for people to complete health surveys once a year and send us a saliva sample through the post
Find out more at thehearthive.org
We’re asking for people to complete health surveys once a year and send us a saliva sample through the post
Find out more at thehearthive.org
June 18, 2025 at 9:50 AM
The Heart Hive is hosting a study to learn more about cardiomyopathy. We’re looking for people with HCM, DCM, ACM and Takotsubo in the UK, aged 18 and over.
We’re asking for people to complete health surveys once a year and send us a saliva sample through the post
Find out more at thehearthive.org
We’re asking for people to complete health surveys once a year and send us a saliva sample through the post
Find out more at thehearthive.org
We want to learn more about the genetics of cardiomyopathy.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
June 5, 2025 at 8:45 AM
We want to learn more about the genetics of cardiomyopathy.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
We’ve added a new study to the Heart Hive!
If you are:
✅ Over the age of 18
✅ Living in the UK
✅ Have a diagnosis of ACM and do not have a pacemaker or defibrillator fitted
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account? Visit thehearthive.org to join us.
If you are:
✅ Over the age of 18
✅ Living in the UK
✅ Have a diagnosis of ACM and do not have a pacemaker or defibrillator fitted
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account? Visit thehearthive.org to join us.
May 30, 2025 at 9:32 AM
We’ve added a new study to the Heart Hive!
If you are:
✅ Over the age of 18
✅ Living in the UK
✅ Have a diagnosis of ACM and do not have a pacemaker or defibrillator fitted
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account? Visit thehearthive.org to join us.
If you are:
✅ Over the age of 18
✅ Living in the UK
✅ Have a diagnosis of ACM and do not have a pacemaker or defibrillator fitted
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account? Visit thehearthive.org to join us.
Your Heart Hive data is stored in a secure location approved by Imperial College London, and used in line with GDPR regulations and data protection law. We will never use it for research without your consent. Read more of our FAQs here: 📲 bit.ly/hh_faqs
May 7, 2025 at 10:10 AM
Your Heart Hive data is stored in a secure location approved by Imperial College London, and used in line with GDPR regulations and data protection law. We will never use it for research without your consent. Read more of our FAQs here: 📲 bit.ly/hh_faqs
In a study commissioned by the UK HRA, only 35% of people felt confident that health & social care research findings would be shared with the public without delay: bit.ly/3El0iPk.
Visit thehearthive.org/research to find out about studies that the Heart Hive community have contributed to.
Visit thehearthive.org/research to find out about studies that the Heart Hive community have contributed to.
April 16, 2025 at 9:45 AM
In a study commissioned by the UK HRA, only 35% of people felt confident that health & social care research findings would be shared with the public without delay: bit.ly/3El0iPk.
Visit thehearthive.org/research to find out about studies that the Heart Hive community have contributed to.
Visit thehearthive.org/research to find out about studies that the Heart Hive community have contributed to.
Signing up for the Heart Hive is quick and easy!
📲 bit.ly/hearthive
If you are living with cardiomyopathy would like to contribute to research, visit thehearthive.org to create an account. Already signed up? Don’t forget to reactivate your account on our new website.
#ParticipateInResearch
📲 bit.ly/hearthive
If you are living with cardiomyopathy would like to contribute to research, visit thehearthive.org to create an account. Already signed up? Don’t forget to reactivate your account on our new website.
#ParticipateInResearch
April 9, 2025 at 9:31 AM
Signing up for the Heart Hive is quick and easy!
📲 bit.ly/hearthive
If you are living with cardiomyopathy would like to contribute to research, visit thehearthive.org to create an account. Already signed up? Don’t forget to reactivate your account on our new website.
#ParticipateInResearch
📲 bit.ly/hearthive
If you are living with cardiomyopathy would like to contribute to research, visit thehearthive.org to create an account. Already signed up? Don’t forget to reactivate your account on our new website.
#ParticipateInResearch
We’ve added a new study to the Heart Hive!
If you are:
✅ Over the age of 18
✅ Living in the US
✅ Have a diagnosis of cardiomyopathy
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account yet? Visit thehearthive.org to join us.
If you are:
✅ Over the age of 18
✅ Living in the US
✅ Have a diagnosis of cardiomyopathy
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account yet? Visit thehearthive.org to join us.
April 4, 2025 at 9:17 AM
We’ve added a new study to the Heart Hive!
If you are:
✅ Over the age of 18
✅ Living in the US
✅ Have a diagnosis of cardiomyopathy
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account yet? Visit thehearthive.org to join us.
If you are:
✅ Over the age of 18
✅ Living in the US
✅ Have a diagnosis of cardiomyopathy
Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account yet? Visit thehearthive.org to join us.
Researchers have shown that while DCM is more common in men, current diagnostic criteria may be leading to underdiagnosis in women.
Listen to an interview with senior author, Dr Upasana (Paz) Tayal, discussing these findings: 📲 bit.ly/4iHSCFs
#ResearchSpotlight #HeartResearch #Cardiomyopathy
Listen to an interview with senior author, Dr Upasana (Paz) Tayal, discussing these findings: 📲 bit.ly/4iHSCFs
#ResearchSpotlight #HeartResearch #Cardiomyopathy
March 26, 2025 at 10:27 AM
Researchers have shown that while DCM is more common in men, current diagnostic criteria may be leading to underdiagnosis in women.
Listen to an interview with senior author, Dr Upasana (Paz) Tayal, discussing these findings: 📲 bit.ly/4iHSCFs
#ResearchSpotlight #HeartResearch #Cardiomyopathy
Listen to an interview with senior author, Dr Upasana (Paz) Tayal, discussing these findings: 📲 bit.ly/4iHSCFs
#ResearchSpotlight #HeartResearch #Cardiomyopathy
We’ve made some updates to our website!
Interested in heart research? ❤🔬
Learn more about our mission, our history, and how you can get involved: 📲 bit.ly/hh_aboutus
#HeartResearch #ParticipateInResearch
Interested in heart research? ❤🔬
Learn more about our mission, our history, and how you can get involved: 📲 bit.ly/hh_aboutus
#HeartResearch #ParticipateInResearch
March 19, 2025 at 11:05 AM
We’ve made some updates to our website!
Interested in heart research? ❤🔬
Learn more about our mission, our history, and how you can get involved: 📲 bit.ly/hh_aboutus
#HeartResearch #ParticipateInResearch
Interested in heart research? ❤🔬
Learn more about our mission, our history, and how you can get involved: 📲 bit.ly/hh_aboutus
#HeartResearch #ParticipateInResearch
Heart disease is the leading cause of death in women worldwide. More research is needed to improve our understanding of sex-specific differences in the development, progression and treatment of heart conditions.
#AccelerateAction #IWD2025 #HeartResearch
#AccelerateAction #IWD2025 #HeartResearch
March 6, 2025 at 11:22 AM
Heart disease is the leading cause of death in women worldwide. More research is needed to improve our understanding of sex-specific differences in the development, progression and treatment of heart conditions.
#AccelerateAction #IWD2025 #HeartResearch
#AccelerateAction #IWD2025 #HeartResearch
Finding a specific genetic cause could transform the care of rare or inherited heart conditions. More research is needed to understand the impact of genetics and improve future treatment.
To contribute to this research, visit thehearthive.org.
#RareDiseaseDay
To contribute to this research, visit thehearthive.org.
#RareDiseaseDay
February 28, 2025 at 9:37 AM
Finding a specific genetic cause could transform the care of rare or inherited heart conditions. More research is needed to understand the impact of genetics and improve future treatment.
To contribute to this research, visit thehearthive.org.
#RareDiseaseDay
To contribute to this research, visit thehearthive.org.
#RareDiseaseDay
💡 #ResearchSpotlight Emma Jennings is studying Biomedical Science and was diagnosed with dilated cardiomyopathy at the age of 1. Her paper on the needs and potential research avenues for young people with DCM combines her lived experience and her perspective as a scientist. Read more: bit.ly/4gFS6WL
February 19, 2025 at 10:02 AM
💡 #ResearchSpotlight Emma Jennings is studying Biomedical Science and was diagnosed with dilated cardiomyopathy at the age of 1. Her paper on the needs and potential research avenues for young people with DCM combines her lived experience and her perspective as a scientist. Read more: bit.ly/4gFS6WL
We are happy to be supporting Team Titin!
Team Titin Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research.
Learn more: TitinMyopathy.com
Team Titin Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research.
Learn more: TitinMyopathy.com
February 14, 2025 at 12:52 PM
We are happy to be supporting Team Titin!
Team Titin Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research.
Learn more: TitinMyopathy.com
Team Titin Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research.
Learn more: TitinMyopathy.com
February is #HeartMonth! Want to get involved in heart research but not sure how? The Heart Hive is an online portal where you can sign up to take part in research studies.
Go to thehearthive.org to find out more and register today.
#NationalHeartMonth #HeartResearch #ParticipateInResearch
Go to thehearthive.org to find out more and register today.
#NationalHeartMonth #HeartResearch #ParticipateInResearch
February 5, 2025 at 11:02 AM
February is #HeartMonth! Want to get involved in heart research but not sure how? The Heart Hive is an online portal where you can sign up to take part in research studies.
Go to thehearthive.org to find out more and register today.
#NationalHeartMonth #HeartResearch #ParticipateInResearch
Go to thehearthive.org to find out more and register today.
#NationalHeartMonth #HeartResearch #ParticipateInResearch
Thrilled to pick up the "Most Innovative" award at the RBHH Research Showcase @gstt-nhs.bsky.social.
We want to open up research to more people. Sign up if you have cardiomyopathy or myocarditis (thehearthive.org) or if you have a study you'd like to add to the Heart Hive - get in touch!
We want to open up research to more people. Sign up if you have cardiomyopathy or myocarditis (thehearthive.org) or if you have a study you'd like to add to the Heart Hive - get in touch!
November 28, 2024 at 11:51 AM
Thrilled to pick up the "Most Innovative" award at the RBHH Research Showcase @gstt-nhs.bsky.social.
We want to open up research to more people. Sign up if you have cardiomyopathy or myocarditis (thehearthive.org) or if you have a study you'd like to add to the Heart Hive - get in touch!
We want to open up research to more people. Sign up if you have cardiomyopathy or myocarditis (thehearthive.org) or if you have a study you'd like to add to the Heart Hive - get in touch!
New activities added to the heart hive:
- Study opened for people who are waiting for cardiac resynchronisation therapy (CRT) device
-Study looking at genetics & cardiomyopathy - looking for people with ARVC, Takotsubo, HCM & DCM
Signup at thehearthive.org & learn more
- Study opened for people who are waiting for cardiac resynchronisation therapy (CRT) device
-Study looking at genetics & cardiomyopathy - looking for people with ARVC, Takotsubo, HCM & DCM
Signup at thehearthive.org & learn more
November 26, 2024 at 12:59 PM
New activities added to the heart hive:
- Study opened for people who are waiting for cardiac resynchronisation therapy (CRT) device
-Study looking at genetics & cardiomyopathy - looking for people with ARVC, Takotsubo, HCM & DCM
Signup at thehearthive.org & learn more
- Study opened for people who are waiting for cardiac resynchronisation therapy (CRT) device
-Study looking at genetics & cardiomyopathy - looking for people with ARVC, Takotsubo, HCM & DCM
Signup at thehearthive.org & learn more
We want to learn more about the genetics of Takotsubo cardiomyopathy.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
#takotsubo #research #cardiomyopathy
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
#takotsubo #research #cardiomyopathy
November 22, 2024 at 6:42 PM
We want to learn more about the genetics of Takotsubo cardiomyopathy.
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
#takotsubo #research #cardiomyopathy
Are you over 18, in the UK and interested in taking part in research?
Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.
#takotsubo #research #cardiomyopathy
An excellent day at the Cardiomyopathy UK National Conference 2024! Lovely to see so many people interested in the Heart Hive’s mission to open up research to more people with #cardiomyopathy and #myocarditis
November 16, 2024 at 4:24 PM
An excellent day at the Cardiomyopathy UK National Conference 2024! Lovely to see so many people interested in the Heart Hive’s mission to open up research to more people with #cardiomyopathy and #myocarditis