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 Three Year Strategy
The charity's current three year strategy sets out our work and objectives from January 2021 to December 2023. The purpose of this plan is to set measurable objectives for each year with the confidence that all activities work towards achieving our vision. Having a three year plan also enables us to plan ahead and ensure that resources can be properly managed.
Our three year plan has been developed by our Trustees and staff, with the valued input of volunteers, clinicians and the beneficiaries of the services we provide. It has been written for all of the Cardiomyopathy UK team and anyone who has an interest in our work.
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.
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 2021 income received from the pharmaceutical industry accounted for 14% 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: (Spring 2023)
Our online medical education work is supported by grants from AstraZeneca, Alnylam, Sanofi 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 currently provides the charity with an unrestricted core grant. Funding from this source has been used across all of the charity's key services as well as our national conference.
The charity's advocacy project is partly funded by a charitable trust and partly by the Pfizer, a company that is developing treatments for amyloidosis. Pfizer has not influenced the aims or objectives of our policy work.
Last year our website and national conference was partly supported by a grant from Bristol Myers Squibb who have developed a treatment for obstructive hypertrophic cardiomyopathy. The company has had no say in the content of our website or the agenda of our national conference. In 2023 the company agreed to support the charity's research and advocacy work along with other non-industry funders.