Cardiomyopathy UK

06/02/2026

💬 “I felt more like a partner in Cardiomyopathy UK than a passive patient.”
💬 “Coming to this conference has allowed her to feel ‘heard’.”

These are just a few of the messages we received from people who attended our last Patient Conference – and they’re exactly why we’re doing it again.

💛 Cardiomyopathy UK Patient Conference 2026: Journeying Together
📅 Saturday 28th March 2026
📍 155 Bishopsgate, London

Come along for a supportive, practical day where you can:
- hear from cardiomyopathy experts
- learn more about your condition and future developments
- meet others living with cardiomyopathy, plus families and carers
- take away information, resources, and reassurance

🎟️ Book your place here: https://www.eventbrite.co.uk/e/cardiomyopathy-uk-conference-2026-tickets-1968512141807?aff=Facebook

📣 If this could help someone you know, please share this post.

05/02/2026

Talking and listening matters 💛

Today is Time to Talk Day – the nation’s biggest mental health conversation. We know it isn’t always easy, but sharing how you feel with a trusted person can make a real difference to your wellbeing.

Living with cardiomyopathy can bring emotional and mental challenges too. As well as talking with friends and family, people affected by cardiomyopathy can access our peer support services. Our support groups and one-to-one Heart to Heart chats offer a welcoming space to talk with someone who understands.

Together, by listening and talking, we can help make conversations about mental health part of everyday life.

Find out more about our support services: www.cardiomyopathy.org/support

Discover support for those affected by cardiomyopathy. Join a support group, receive one-on-one telephone support and browse our information resources.

05/02/2026

Taking time for connection and support 💙

Time to Talk Day is about making space for honest, open conversations about mental health. We know that living with cardiomyopathy can bring emotional and mental challenges, and we want to make space to talk about them.

Cardiomyopathy UK’s Specialist Nurses are here to listen and answer your questions. You can talk with them about anything on your mind, including how cardiomyopathy is affecting your life, mood, or relationships.

☎️ Call: 0800 018 1024
⏰ Monday to Friday, 8.30am–4.30pm
(not open on bank holidays)

Learn more about our support services: www.cardiomyopathy.org/nurses-helpline

02/02/2026

There’s nothing more inspiring than seeing our fundraisers return year after year❤️

In January, Rachel took on the Ultra Challenge Winter Walk once again, raising an incredible £600. Walking along the Thames, the route held deep personal meaning, filled with memories of her husband Mostyn’s time as a rower and coach before his cardiomyopathy diagnosis three years ago.

The Ultra Challenge Series offers unforgettable walking challenges across the UK, and we’d love for you to join Team Cardio in 2026.

Sign up and make a difference with us: https://bit.ly/3LJYe7i

28/01/2026

🎟️ Early-bird tickets are £10 until Saturday 31st January (3 days left).

Book here: eventbrite.co.uk/e/cardiomyopathy-uk-conference-2026-tickets-1968512141807?aff=Facebook

Cardiomyopathy UK Patient Conference 2026: Journeying Together

📍 155 Bishopsgate, London | 🗓️ Sat 28th March 2026

A day for anyone living with cardiomyopathy – and the people who love and support them. Expect clear, trusted information, practical sessions, and the chance to meet others who understand without you having to explain.

💬 “I felt more like a partner in Cardiomyopathy UK than a passive patient.”

Please share this with someone who might want to come 💛

26/01/2026

Update: NICE guidance on acoramidis for ATTR-CM 💛

National Institute for Health and Care Excellence (NICE) has published final guidance (14th January 2026) recommending acoramidis (brand name Beyonttra, from Bayer) as a treatment option for adults living with ATTR-CM – including wild-type and inherited (variant/hereditary) forms.

𝐖𝐡𝐚𝐭 𝐢𝐬 𝐀𝐓𝐓𝐑-𝐂𝐌?
ATTR-CM stands for transthyretin amyloidosis with cardiomyopathy. It’s a rare, progressive condition that affects the heart muscle and can cause symptoms like breathlessness, fatigue, swelling and reduced ability to exercise.

𝐖𝐡𝐚𝐭 𝐝𝐨𝐞𝐬 𝐚𝐜𝐨𝐫𝐚𝐦𝐢𝐝𝐢𝐬 𝐝𝐨?
Acoramidis is designed to help slow the disease process by stabilising a protein involved in ATTR-CM. It works differently to some other treatments that aim to reduce how much of that protein the body makes.

𝐖𝐡𝐚𝐭 𝐡𝐚𝐩𝐩𝐞𝐧𝐬 𝐧𝐞𝐱𝐭 (𝐍𝐇𝐒 𝐚𝐜𝐜𝐞𝐬𝐬)?
When NICE recommends a treatment “as an option”, it should be made available within the required timeframes if the clinician responsible for someone’s care believes it’s the right option for them. In England, funding is in place so acoramidis can be implemented 30 days after publication. In Wales, NICE notes funding is usually provided within 60 days of the first publication of the final draft guidance.

𝐇𝐨𝐰 𝐂𝐚𝐫𝐝𝐢𝐨𝐦𝐲𝐨𝐩𝐚𝐭𝐡𝐲 𝐔𝐊 𝐰𝐚𝐬 𝐢𝐧𝐯𝐨𝐥𝐯𝐞𝐝
We contributed charity input to the NICE appraisal process, reflecting what we hear from people affected by ATTR-CM – including the impact on daily life and the importance of fair, consistent access to treatment options.

We’ve published a clear summary of what the guidance says, what happens next, and a brief comparison with recent NICE guidance on vutrisiran.

👉 Read the full update: https://www.cardiomyopathy.org/news-blogs/latest-news/nice-recommends-acoramidis-option-adults-living-attr-cm-0

👥 Want support? Our ATTR-CM page (including info about our February online support group with Amyloidosis UK) is here: https://www.cardiomyopathy.org/ATTR-CM

💬 If you have questions about what this means for you, we recommend speaking with your specialist clinical team.

25/01/2026

An autumn running challenge awaits! Places are now open to join Team Cardio for this year’s Cardiff Half Marathon and Royal Parks Half Marathon.

Dominique, who ran the Royal Parks Half in 2025, shares: “I started running in 2024 to help my fitness and mental health, and then I caught the running bug! I wanted to give back to this amazing charity, which is why I signed up for the half marathon. I completed the Royal Parks Half in 2 hours and 35 minutes and raised £1,155! It was an honour to run for Cardiomyopathy UK, and I hope to tackle the London Marathon for them in the future.”

Whether it’s your first half marathon or you’re a seasoned runner, every step you take makes a difference. Find out more about our challenges: https://www.cardiomyopathy.org/find-a-challenge

23/01/2026

🧬 NEW: Genetic Advice Helpline

If cardiomyopathy runs in your family – or you have questions about inheritance patterns, screening or genetic testing – our Cardiomyopathy Nurse Specialists are here to help.

We can support you to:
✅ talk through family history and inheritance patterns
✅ understand what genetic testing may involve
✅ think through what results could mean for relatives
✅ provide a supporting letter for your GP to help with appropriate referral/screening

📞 Call free: 0800 018 1024
🕒 Mon–Fri, 8:30am–4:30pm (closed bank holidays)

Please note: this service is supportive and informational – it does not replace NHS genetic services and cannot arrange or interpret genetic tests.

🔗 Find out more: https://www.cardiomyopathy.org/living-cardiomyopathy/how-we-can-help-you/genetic-advice-helpline

If you know someone who might benefit, please share this post. 💛

21/01/2026

🎟️ EARLY BIRD DISCOUNT ENDS 31ST JANUARY — book now while it’s cheaper.

Cardiomyopathy UK Patient Conference 2026 – Journeying Together

📍 155 Bishopsgate, London | 🗓️ Saturday 28th March 2026

If you’re living with cardiomyopathy — or you support someone who is — come and spend the day with people who truly understand. You’ll leave with trusted information, practical tips, and real connection.

✅ 15+ expert talks and workshops
✅ Time to meet others who “get it”
✅ Take-home information and support

💬 Past attendee: “I felt more like a partner in Cardiomyopathy UK than a passive patient. The entire event was well planned and carried out.”

🔗 Book early bird tickets here: https://www.eventbrite.co.uk/e/cardiomyopathy-uk-conference-2026-tickets-1968512141807?aff=Fa…

👥 Tag someone who should come with you (family, friend, carer)
📤 Share this post — it really helps more people in the community find it.

14/01/2026

Join Team Cardio in this year’s Great North Run for Cardiomyopathy UK and make every step count!

Matt, one of our amazing runners from 2025, shares:
“Crossing the finish line at the Great North Run wasn’t just about the miles – it was about being part of something bigger, knowing that every step was helping to make a difference. I couldn’t be prouder to support Cardiomyopathy UK.”

Whether you’re a seasoned runner or just starting out, we’d love to have you on our team.

Sign up now and start your 2026 with a new challenge!

https://www.cardiomyopathy.org/great-north

30/12/2025

We’re excited to share a glimpse inside the latest issue of our MyLife magazine 💙

☕️ Coffee & Catch Up: Darren joined from Calgary, Canada, at 7am every week and later travelled to the UK to meet the friends with cardiomyopathy he’d made through the group.

🏃‍♀️ Fundraising and Community: Heather’s family have raised nearly £25,000 in memory of her husband, Brian, alongside Great North Run runners and community clubs (including groups raising £40,000+).

💊 New Medicines Update: What’s coming down the line for ATTR-CM and HOCM – including vutrisiran, acoramidis and aficamten – and how these sit alongside existing options like tafamidis and mavacamten.

👩‍⚕️ Nurse Q&A + Winter Advice: What to do if your pharmacy can’t get a medication, plus Q&As on sleep and heart failure – and how to send questions to our nurse team.

📊 Publication of our State of the Nation report: Of 1300 voices, 34% missed cardiac rehab they wanted, 32% needed emotional support, 28% said care isn’t joined up.

🏥 NHS 10-Year Health Plan: what it could mean for the future of cardiomyopathy care – earlier detection, genomics and more joined-up services.

🧬 Research: how to join our Research Network/newsletter list to hear about clinical trials, surveys and ways you can help shape future care – plus our role in the British Heart Foundation’s £30 million CureHeart genetic therapies research project.

💬 Support & Quality: Outcomes from our ACE programme (e.g., 83% felt less anxious/low after taking part), our ongoing nurse helpline (with an additional Genetics Helpline coming), plus PIF TICK certification and recent award recognition.

📅 Patient Conference 2026 – tickets on sale: “Journeying Together” (London, 28th March 2026) – come for the updates, ask questions, meet the professionals behind this work, and meet other people living with cardiomyopathy.

👉 Read the full issue and explore the MyLife archive here: https://www.cardiomyopathy.org/mylife

You can also sign up there to join the thousands of people who receive free printed copies of MyLife straight to their door.

🎟️ Get your conference tickets here: https://hov.to/0466aad9

23/12/2025

12 Days of Stories - Day 12❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is The Coope’s story.

“My name’s Serena, my husband is Steve, and our boys are Harry and George. I was diagnosed with cardiomyopathy during my pregnancy with Harry, who is now 22. I’d been screened as a child because my sister has the condition, but I never showed any signs or symptoms.

Two years later, when our youngest son, George, was born, he had a few complications. He had two small holes in his heart and a thickening in the muscle. At the time, George showed no signs of a heart condition. When Harry and George were aged 3 and 1, they were genetically tested to see if they carried the gene. Harry did not, however George did carry the gene and would need to be continued to be screened each year.

In 2014, we were told the shocking news that George had developed hypertrophic cardiomyopathy. George didn’t really understand what this meant as he was only seven at the time. As his condition became more complicated, he was referred to Great Ormond Street Hospital. Over the years, George has struggled with various symptoms including breathlessness, extreme fatigue and palpitations, which has really impacted his life. George has now had two myectomies. The first was when he was eight years old and then another was last year. George also had an ICD fitted when he was 13.

George handles his conditions well and he’s always had a great attitude. Even when it has been very tough for him, like last year before his operation and his symptoms were so extreme. He’s now starting to feel a lot better and he’s back playing golf, and for the first time he feels like he’s living his life.

When George was first diagnosed, Steve felt very helpless and needed to have something to focus on. He decided to bike from London to Paris. Since then, we have also taken part in fun runs, coffee mornings, skydives and head shaves. Earlier this year, Harry ran the London Marathon. We are proud to have raised nearly raised £50,000 for Cardiomyopathy UK!”