What Cardiomyopathy UK does

Cardiomyopathy UK is a UK-registered charity founded in 1989 and headquartered in Amersham, providing information, support, advocacy, and research funding for people affected by cardiomyopathy and related cardiac conditions including arrhythmias, cardiac amyloidosis, myocarditis, and heart failure. The organization serves an addressable patient population of approximately 266,000 people in the UK (roughly 1 in 250) across multiple condition subtypes (HCM, DCM, ARVC, LVNC, PPCM, RCM, Takotsubo), with secondary audiences of families, caregivers, young people aged 16-24, and healthcare professionals. Its core offering is a free support ecosystem comprising a specialist nurse helpline, a genetic advice helpline, telephone peer support (Heart to Heart), 30+ in-person and online condition-segmented support groups, an annual national conference, PIF TICK-accredited information resources, the MyLife magazine, and a Youth Hub with advisory board. The technology footprint is a conventional content-and-community website plus telephony, with no proprietary software, AI, or API products.

The charity funds cardiomyopathy research through Catalyst Grants and acts as a research partner on clinical studies including CureHeart (gene therapy), the Crucial Study, the BRITISH Study, and the MyClimb Study, and participates in the Global Heart Hub's international Cardiomyopathy Patient Council. It operates advocacy programmes (Change Makers, Change Agenda) targeting UK and Scottish government policy, and curates external consumer-health guidance covering devices such as Kardia Mobile, OMRON ECG monitors, and Apple Watch.

Cardiomyopathy UK operates as a non-profit with no government funding, relying on individual donations, community fundraising, challenge events (marathons, ultra-challenges, skydives), corporate partnerships (including a Novartis grant for the #InMyFamily campaign), legacy giving, and a small online shop. It is registered in England and Wales (charity no. 1164263) and Scotland (SC053398) and is regulated by the Fundraising Regulator. Recent leadership changes include the appointment of Katharine McIntosh as CEO in 2026 and Stephen Kirkham as Chair of Trustees.

Name

Cardiomyopathy UK

Legal name

Cardiomyopathy UK

Website

https://cardiomyopathy.org

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

11–50 employees

Short description

Cardiomyopathy UK is a UK-registered charity founded in 1989 that provides free information, nurse-led helpline support, peer groups, and research funding for the roughly 266,000 people in the UK living with cardiomyopathy and related heart conditions.

Ownership category

akta.pro rank

Product category

Patient Support Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Heart Failure & Transplant Cardiology (HLAKABAD)

Keywords

• Heart condition support
• Cardiac patient advocacy
• Cardiomyopathy information services
• Peer support helplines
• Cardiac research funding

Headquarters

HQ city

Amersham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Fundraising: Cardiomyopathy UK relies primarily on donations from individuals, fundraising events (marathons, challenges, skydives), corporate partnerships, and legacy gifts. As an independent charity, they do not receive government funding.
2. Online Shop: The charity operates an online shop selling merchandise and resources.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels5 records

Core offering

Cardiomyopathy UK is a registered charity that provides free information, support, education, and research funding for people affected by cardiomyopathy and related heart conditions. Its services include specialist nurse and genetic advice helplines, a network of 30+ in-person and online support groups, telephone peer support (Heart to Heart), youth-specific programs, PIF TICK accredited information resources, a research grants program, advocacy campaigns, and an annual national conference.

Product overview

Cardiomyopathy UK operates primarily as a charitable support organization rather than a technology product company. Its core offering is a comprehensive information and support ecosystem comprising the main website as the central hub, complemented by multiple support channels including nurse/helpline services, genetic counseling, telephone peer support (Heart to Heart), and both online and in-person support groups. The organization provides educational resources with PIF TICK accreditation, runs annual national conferences, and maintains youth-specific services through its Youth Hub and advisory board. Research engagement includes partnerships in clinical studies and a catalyst grants program. The charity also advocates for patients through its Change Makers program and publishes regular content through MyLife magazine. The organization is registered as a charity in England and Wales (no. 1164263) and Scotland (no. SC053398), and does not offer a public API or AI-powered technology products.

Differentiator

Problem solved

Functional benefit

Products and services

• Nurse Helpline

Quantifiable outcome

• 266,000 people in the UK affected by cardiomyopathy supported through information and services

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core and minor.

• Global Heart HubcoreStrategic or Co-development PartnerCardiomyopathy UK is part of the Global Heart Hub's Cardiomyopathy Patient Council, a group of 10 cardiomyopathy-focused charities from around the world working together to raise the profile of cardiomyopathy globally and advocate for patient needs.
• Marie CuriecoreStrategic or Co-development PartnerCardiomyopathy UK has a partnership with Marie Curie focused on palliative care information and support, making end-of-life care guidance more accessible to those affected by cardiomyopathy.
• CureHeartcoreStrategic or Co-development PartnerResearch partnership supporting gene therapy research for inherited cardiomyopathies. CureHeart is a major international research initiative working on genetic treatments.
• Crucial StudycoreStrategic or Co-development PartnerResearch partnership supporting clinical research into cardiomyopathy diagnosis and treatment.
• Health and Social Care Alliance ScotlandminorStrategic or Co-development PartnerWorking with the Health and Social Care Alliance Scotland to influence health and social care policies in Scotland affecting people with cardiomyopathy.
• Scottish Heart Failure AllianceminorStrategic or Co-development PartnerPartnership to improve care and support for heart failure patients in Scotland.
• Network of Inherited Cardiac Conditions ScotlandminorStrategic or Co-development PartnerCollaboration with Scottish healthcare network focused on inherited cardiac conditions including cardiomyopathy.
• Public Health ScotlandminorStrategic or Co-development PartnerPartnership with Public Health Scotland's Cardiac Audit Programme to improve cardiac care data and outcomes in Scotland.

Scale indicators3 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• Cardiac Risk in the Young (CRY): UK charity focused on young sudden cardiac death, inherited cardiac conditions, and cardiac screening. Closely comparable mission — screening, family support, and research into inherited cardiac conditions — and serves an overlapping inherited-cardiomyopathy patient base.
• Arrhythmia Alliance: UK-based charity focused on heart rhythm disorders including arrhythmias, which are explicitly listed among Cardiomyopathy UK's 'related disorders.' Comparable as a specialist cardiac patient-support and advocacy organization with overlapping helpline and information services.
• SADS UK: UK charity supporting families affected by Sudden Arrhythmia Death Syndromes and inherited cardiac conditions. Directly comparable in mission around genetic cardiac conditions, family screening, and bereavement support for sudden cardiac events.
• Children's Heart Federation: UK charity supporting children with congenital and acquired heart conditions and their families. Comparable in providing paediatric heart-condition support, family guidance, and information resources — overlapping Cardiomyopathy UK's Thriving With programme for parents.
• Hypertrophic Cardiomyopathy Association (HCMA): US-based nonprofit dedicated to hypertrophic cardiomyopathy, providing patient support, education, and advocacy. Direct international peer — single-condition cardiomyopathy charity with an analogous helpline, support network, and clinical-education model.
• Pumping Marvellous Foundation: UK charity dedicated to supporting people affected by heart failure. Directly comparable as a specialist cardiovascular patient-support charity serving a heavily overlapping patient population (Cardiomyopathy UK explicitly supports heart failure patients via its Advanced Heart Failure support group).

Broad incumbents

• Heart UK – The Cholesterol Charity: UK charity focused on cholesterol and lipid management, with adjacent cardiometabolic risk focus. Comparable as a UK cardiovascular health charity providing patient information and healthcare-professional resources, but with a different disease focus.
• British Heart Foundation: The UK's largest cardiovascular charity, funding research, providing patient support, and running retail/shop networks. Comparable as a UK heart-disease nonprofit with overlapping patient-support and research-funding missions, but with far broader scope and substantially greater scale.

Emerging players

• Global Heart Hub: International alliance of heart-patient organizations of which Cardiomyopathy UK is a core member via its Cardiomyopathy Patient Council. Comparable as a coordinating body for cardiovascular patient advocacy, providing a peer-platform perspective rather than direct service delivery.
• Marfan Trust: UK charity supporting people with Marfan syndrome, a connective-tissue disorder with significant cardiac involvement. Comparable as a small UK disease-specific charity offering patient information, helpline support, and research funding in an adjacent inherited cardiac space.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks4 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/cardiomyopathy-uk

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Cardiomyopathy UK