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Cardiomyopathy UK

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Cardiomyopathy UK

Cardiomyopathy UK is the specialist national charity for people affected by cardiomyopathy.

We provide support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research.

23/03/2026

We’re proud to share a major milestone for Cardiomyopathy UK 💜

For the first time, we are funding our own research grants.

Through our new Catalyst Grants programme, we are supporting two early-stage research projects in 2026:
🫀 a project exploring how AI could improve risk prediction in cardiomyopathy
🧬 a project investigating new treatment targets for hypertrophic cardiomyopathy (HCM) in children at risk

This marks an important step forward in our commitment to supporting the cardiomyopathy research community. By funding early-stage research, we can help researchers test promising ideas, build vital evidence and generate the momentum needed to attract further investment.

Just as importantly, people affected by cardiomyopathy helped shape the selection process. The projects we are funding reflect priorities identified through our Priority Setting Partnership, and applications were reviewed by both scientific experts and people with lived experience.

This means the research we support is shaped both by scientific expertise and by the real needs, experiences and priorities of the cardiomyopathy community.

We are incredibly excited to support these researchers and to see where their work leads. We are also deeply grateful to our supporters, whose generosity makes milestones like this possible.

🔗 Read more about our first research grants: https://www.cardiomyopathy.org/news-blogs/latest-news/cardiomyopathy-uk-awards-our-first-ever-research-grants

📩 Join our Research Network to hear the latest research news and opportunities to get involved: https://www.cardiomyopathy.org/form/research-network-subscribe

11/03/2026

Cardiomyopathy UK wants to better understand the experiences and views of people living with hypertrophic cardiomyopathy (HCM), whether obstructive or non-obstructive.

If you are aged 18 or over, live in the UK, and have been diagnosed with HCM within the last 10 years, or you are a family member, partner or carer of someone with this condition, we invite you to complete our survey about diagnosis, symptoms, care and treatment within the NHS.

This survey has been developed by Cardiomyopathy UK and is funded by a grant from Cytokinetics, a biopharmaceutical company developing medicines, including treatments for HCM.

Your feedback will help us shape UK policy, including submissions to NICE and the Scottish Medicines Consortium (SMC) on new treatments.

To find out more and complete the survey, please follow the link below. The survey closes on Friday 10th April.

➡️ https://www.surveymonkey.com/r/6KRF225

10/03/2026

Last tickets now available for the Cardiomyopathy UK Patient Conference 2026 – Journeying Together 🎟️

In just 18 days, we’ll be coming together in London for a full day of expert-led sessions, practical insight and community connection.

📍 Saturday 28th March 2026
📍 155 Bishopsgate, London (near Liverpool Street)

This year’s conference features 16 expert talks covering important topics across diagnosis, treatment and everyday living with cardiomyopathy, including sessions on newly diagnosed cardiomyopathy, women’s health, therapies in development, genetic testing, keeping active, AI in healthcare, family screening and getting involved in research.

Whether you are living with cardiomyopathy, supporting a loved one, or simply want to learn more, this is a valuable chance to hear the latest updates and connect with others in the community.

Last tickets are available now – book your place today:
https://www.eventbrite.co.uk/e/cardiomyopathy-uk-conference-2026-tickets-1968512141807?aff=Facebook

Along with our wonderful fundraisers, we're grateful to our Conference Sponsors for supporting this event:

Supported by an unconditional grant from Cytokinetics who have had no input to the meeting agenda or content.

Pfizer Ltd have provided financial support for this meeting and have had no involvement or influence into its development and content.

06/03/2026

Heart to Heart Support

💕 One-to-one peer support from Cardiomyopathy UK 💕

If you're curious about our Heart to Heart service, this video will tell you everything you need to know!

To give Heart to Heart a go, head to our website ⬇️
https://www.cardiomyopathy.org/heart-to-heart

05/03/2026

We’d like to say a huge thank you to Independent Container Line, who raised £6,035.52 throughout 2025 while supporting Cardiomyopathy UK as their Charity of the Year 🏆🎉

Throughout the year their team organised fundraising activities and helped raise awareness of cardiomyopathy, making a meaningful contribution to our work supporting people affected by the condition.

Sarah, who nominated Cardiomyopathy UK as ICL’s Charity of the Year, shared “We chose to raise money for Cardiomyopathy UK in memory of my Mum, Chris, who sadly died in May 2024. We were unaware that my mum had cardiomyopathy until after it had happened, and my way of trying to deal with my grief was doing something to help people, and my amazing company ICL jumped on board as well!”

We’re incredibly grateful for their partnership and support. Thank you to everyone at Independent Container Line who took part ❤️

28/02/2026

❤️ Rare Disease Day 2026 ❤️

Rare diseases can cause or contribute to the development of .

These conditions may directly affect the heart muscle or lead to changes which affect the heart over time.

---

ℹ️ Fabry disease: a lysosomal storage disorder caused by a genetic variant.

https://www.cardiomyopathy.org/about-cardiomyopathy/types-cardiomyopathy/hypertrophic-cardiomyopathy

ℹ️ Amyloidosis: a group of diseases characterized by the accumulation of misfolded proteins (amyloid) in tissues.

https://www.cardiomyopathy.org/about-cardiomyopathy/related-disorders/cardiac-amyloidosis

ℹ️ Haemochromatosis: a metabolic disorder that causes iron overload in the body. Excess iron deposits in the heart can lead to dilated or restrictive cardiomyopathy.

https://www.cardiomyopathy.org/about-cardiomyopathy/related-disorders/haemochromatosis-and-cardiomyopathy

---

Rare Disease Day aims to help raise awareness and generate change for the 300 million people worldwide living with a rare disease, their loved ones, and carers 🌍.

Find out more here ⬇️
https://www.rarediseaseday.org/

Rare Disease Day

25/02/2026

It’s the final week of National Heart Month 2026 💗 so we’re sharing a topic we get asked about a lot: fatigue.

Many people living with cardiomyopathy tell us they feel tired or “wiped out” – and that can make day-to-day life harder.

One helpful approach is energy conservation, which can support you to keep doing the things that matter most. It’s also important to avoid overexertion, as this can leave you needing unplanned rest.

Try remembering the three Ps:
✅ Plan
✅ Prioritise
✅ Pace

Read our blog for practical tips:
https://www.cardiomyopathy.org/news-blogs/latest-news/energy-conservation-cardiomyopathy

If you’re struggling with symptoms, speak to your healthcare team. You can also call our Nurse Helpline on 0800 018 1024 (Mon–Fri, 08:30–16:30).

23/02/2026

Today is Helpline Awareness Day (Monday 23th February) 💙

If you’re living with cardiomyopathy – or you’re a family member, carer, or healthcare professional – our specialist helplines are here to offer support, information and a listening ear.

Cardiomyopathy UK Helpline + Genetic Advice Helpline
📞 Call: 0800 018 1024
📧 Email: supportnurse@cardiomyopathy.org

💬 Live chat: cardiomyopathy.org

Our free helpline is staffed by our specialist cardiac support nurses Jayne, Emma, Caryl and Janice, who can help you talk things through – whether you have questions, need guidance, or simply want to be heard.

⏰ Lines open: Monday to Friday, 8:30am–4:30pm

19/02/2026

It’s National Heart Month, and caring for your heart includes caring for your mind. 🫀🧠

Managing stress is an important part of supporting heart health and overall wellbeing. Simple, regular mindfulness moments – like taking a few slow breaths or noticing your feet on the floor – can help reduce stress over time.

Our ACE Programme offers practical, evidence-based tools to support people affected by cardiomyopathy to manage stress, work with difficult thoughts and emotions, and stay connected to what matters most. ACE is a fully funded, 6-week online programme based on values-led skills like mindfulness and emotional acceptance.

Find out more: https://www.cardiomyopathy.org/wellbeing-support

11/02/2026

Ramadan Mubarak to everyone in our community who will be observing 💛

With Ramadan starting next week, we wanted to share guidance from our Specialist Nurse Team for anyone living with cardiomyopathy who is considering fasting. In many cases it may be possible to fast safely – but your health always comes first.

✅ Speak to your doctor or nurse before fasting
✅ Never skip prescribed medication (ask about safe timing changes in advance)
✅ Break your fast if you feel unwell

If you develop symptoms such as worsening breathlessness, swelling, dizziness/faintness, palpitations or unusual fatigue, please seek medical advice.

Read our full guidance here: https://www.cardiomyopathy.org/news-blogs/latest-news/ramadan-and-cardiomyopathy-fasting-safely
Our Nurse Helpline is here too: 0800 018 1024 (Mon–Fri, 08:30–16:30).

10/02/2026

Marty’s Penny Bank has raised £100,000 for Cardiomyopathy UK ❤️

We’re so proud to celebrate this incredible milestone with Marty, Sarah, Darren, and their wonderful friends and family, who have now raised £100,000 to support people affected by cardiomyopathy.

Marty was diagnosed with cardiomyopathy before he was even born, and the Bishop’s fundraising has been inspired by their journey with him. Through marathons, skydives, concerts, supermarket collections, and so much more, their dedication and generosity have made a real difference to our community. We can’t thank them enough for the support they’ve shown over the years.

We also want to give a special shout-out to Marty, who has been nominated for three Yorkshire Choice Awards:
🏆 Rob Burrow Outstanding Courage
🏆 Inspirational Individual
🏆 Fundraiser of the Year

The winners are decided by public vote, and we’d love our community to show their support. If you’re able to, please consider voting for Marty here: https://www.yorkshirechoiceawards.co.uk/vote

Huge congratulations to the whole family - and thank you again for everything you’ve done ❤️

09/02/2026

It’s National Heart Month – a reminder to prioritise cardiovascular health and take small steps each day to look after your heart.

Small choices make a big difference.

Filling your plate with heart-healthy foods like fruit, vegetables, whole grains, and healthy fats can help protect the hearts we love. Find practical tips and guidance here:
https://www.cardiomyopathy.org/living-cardiomyopathy/lifestyle-and-exercise/eating-healthily

And if you’d like to go deeper, join us at our National Conference on Saturday 28th March to hear from the experts: https://www.eventbrite.co.uk/e/cardiomyopathy-uk-conference-2026-tickets-1968512141807?aff=Facebook

Address

75A Woodside Road
Amersham
HP66AA

Opening Hours

Monday	8:30am - 4:30pm
Tuesday	8:30am - 4:30pm
Wednesday	8:30am - 4:30pm
Thursday	8:30am - 4:30pm
Friday	8:30am - 4:30pm

Website

http://www.cardiomyopathy.org/

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