We work with a team of professional staff, clinical experts and fantastic volunteers, all of whom are passionate about raising awareness and providing invaluable support and advice. Our approach ensures that we continue to make a difference and help to change lives.
Our Five Year Strategy: 2024 - 2028
Our five year strategy sets out our work and objectives from January 2024 to December 2028. Over the next five years we want more people living with cardiomyopathy to receive the treatment and support they need to live a long and fulfilling life. We want health and social care professionals to be better able to detect and treat cardiomyopathy and we want to continue shaping research that will improve the long-term future of cardiomyopathy care.
Collaboration and Partnership
We often find that the best way to achieve our objectives is by working with other stakeholders. Our charity has close relationships with a wide range of other charities and medical associations, such as the Alliance for Heart Failure, Genetics Alliance, The British Heart Foundation and the British Society for Heart Failure.
By working with these groups we can ensure that our key messages are heard and we are better able to affect the changes we need to ensure that people with cardiomyopathy receive appropriate care and treatment.
Our collaborative approach means that although we are a relatively small charity we can still make a big impact.
Joel Rose, CEO.
Working Internationally
We play an active part in the international cardiomyopathy community so that we can be a stronger and more impactful champion for people affected by cardiomyopathy.
Working with the pharmaceutical industry
The charity chooses to work with the pharmaceutical and medical device industry because we believe that we have a shared interest in raising awareness of the condition, educating healthcare professionals and improving access to care and treatment. In 2023 income received from the pharmaceutical industry accounted for less than 11% of the charity's total income.
Some of the companies we work with, and that provide funding for our work, also produce medicines and devices that are used by people with cardiomyopathy and this has the potential to cause of conflict of interest. We manage this by working according to our own policy which, amongst other things, limits the total income that the charity will receive from the pharmaceutical industry and guarantees our independence. We also ensure that where we work with the pharmaceutical industry, those relationships are compliant with the Association of British Pharmaceutical Industry's code of practice. You can read our policy here. We also declare any potential conflicts of interests when making submissions to the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC)- the bodies that decide on whether a treatment is available on the NHS.
Current projects supported by the pharmaceutical industry: (Winter 2024/5)
- Our online medical education work is supported by grants from AstraZeneca, Alnylam, and Bristol Myers Squibb. These companies either have or are developing treatments for heart failure, cardiomyopathy or amyloidosis. These companies have not influenced the content of our online education and we will not be sharing any data collected via our online learning platform with these companies.
- Tenaya have agreed to support our medical education work from summer 2024 as well as our national conference 2024.
- Our advocacy project is partly funded by a charitable trust and partly by Pfizer, a company that provides a treatments for amyloidosis cardiomyopathy. Pfizer has not influenced the aims or objectives of our policy work.
- We have an agreement in place with Bristol Myers Squibb to provide consultancy and insights for a number of their projects. We receive payments from them for the time that give to this work.
- Bristol Myers Squibb and Cytokinetics have provided funding for the charity's national state of cardiomyopathy care report project.
- Cytokinetics has provided funding to support the charity's website and the creation of case study video and text content for social media and the website.
Our position on the use of animals in research
Read our position statement on the use of animals in research