## **International Cardiomyopathy Network (ICoN)** Trustees’ annual report and financial statements 18[th] July 2019 – 31[st] December 2020 Registered charity number: 1184472 International Cardiomyopathy Network Trustees’ annual report and financial statements 18[th] July – 31[st] December 2020 The trustees present their report with the financial statements of the charity for the period 18[th] July 2019 (the date of registration) to the year ended 31 December 2020. The trustees have adopted the provisions of Accounting and Reporting by Charities; Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) ## **Objectives and Activities** The objects of the charity as set out in its governing document are; - (1) To advance the education of healthcare professionals on the subject of cardiomyopathy and related diseases of the heart muscle through the provision of educational learning opportunities and other methods that trustees see fit so as to improve the detection and treatment of such diseases for the public benefit. - (2) To improve the health of people affected by cardiomyopathy and related diseases of the heart muscle through the promotion and facilitation of research for the public benefit in all aspects of cardiomyopathy and related diseases of the heart muscle by providing networking opportunities for researchers, support and advice to researchers and other means trustees see fit. - (3) To advance the education of healthcare professionals worldwide through the dissemination of the results of research into cardiomyopathy and related diseases of the heart muscle. - (4) To improve the health of people affected by cardiomyopathy and diseases of the heart muscle worldwide through the creation, monitoring and development of relevant guidance on the treatment of such diseases. - (5) To improve the health of people affected by cardiomyopathy worldwide through collaboration with relevant stakeholders in advocating for improved access to treatment for people affected by such diseases. - (6) To increase awareness of cardiomyopathy and related disorders among the general public and the support and information available to people with cardiomyopathy and related conditions. ## **Achievements and Performance** Trustees had originally expected to begin their programme of charitable activity in January 2020 following registration of the charity in July 2019. By the start of 2020, however, it had become clear to Trustees that all charitable activity should be put on hold given that all trustees and the intended beneficiaries of activity hold front line roles in the NHS and other European health services. Trustees however did continue to meet throughout the period to develop plans for 2021 on the assumption that pandemic restrictions across Europe would begin to ease in the latter half of that year. International Cardiomyopathy Network Trustees’ annual report and financial statements 18[th] July – 31[st] December 2020 These regular meeting also provided a valuable forum for trustees, who represent leading experts in cardiomyopathy throughout Europe, to discuss the impact of the pandemic on people with cardiomyopathy and how different health systems were coping with the needs of cardiomyopathy patients. ## Future Plans Trustees aim to begin delivering charitable activity in 2021 and will focus on the provision of online learning opportunities for healthcare professionals through a series of short “heart muscle talks”. Trustee also plan to work with relevant partners to deliver an international cardiomyopathy focused conference towards the end of the year. Trustees will also begin the process or raising income for future activity and raising the profile of the charity through establishing an online presence. ## **Financial Review** There was no income or expenditure recorded during the reporting period and the charity currently holds no funds. Trustees expect to be in a position to approach potential funders in 2021. It is expected that the primary source of income will come from the pharmaceutical industry. ## **Structure, Governance and Management** The charity is registered as a charitable incorporated organisation (CIO). The members of the CIO are its charity trustees. The only persons eligible to be members of the CIO are its charity trustees. Membership of the CIO cannot be transferred to anyone else. Any member and charity trustee who ceases to be a charity trustee automatically ceases to be a member of the CIO. Apart from the first charity trustees, every trustee must be appointed for a term of 3 years by a resolution passed at a properly convened meeting of the charity trustees. In selecting individuals for appointment as charity trustees, the charity trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO. ## **Reference and Administrative details** International Cardiomyopathy Network (ICoN) Registered charity number: 1184472 ## Correspondence address C/O Cardiomyopathy UK 75a Woodside Road Amersham Buckinghamshire HP6 6AA International Cardiomyopathy Network Trustees’ annual report and financial statements 18[th] July – 31[st] December 2020 ## Trustees Prof. Perry Elliott (UK) - Chair Appointed July 2019 Dr Aris Anastasakis (Greece) Appointed July 2019 Prof. Eloisa Arbustini (Italy) Appointed July 2019 Prof. Iacopo Olivotto (Italy) Appointed July 2019 Dr Juan Pablo Kaski (UK) Appointed July 2019 Dr Juan Ramon Gimeno Blanes (Spain) Appointed July 2019 Prof. Lucie Carrier (Germany) Appointed July 2019 Prof. Ales Linhart (Czech Republic) Appointed July 2019 Professor Jolanda van der Velden (Netherlands) Appointed April 2021 ## **Declarations** The Trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s trustees Signature Date 26[th] October 2021 Prof. Perry Elliott, Chair of Trustees ||**International Cardiomyopathy Network**|**International Cardiomyopathy Network**|**International Cardiomyopathy Network**|**1184472**|**1184472**|**1184472**|**CC16a**| |---|---|---|---|---|---|---|---| ||**For the period**
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Signed by one or two trustees on behalf of all
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Print Name
Perry ELLIOTT|**Endowment**
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approval| |||Perry ELLIOTT|26th Oct 2021| ||||| CCXX R2 accounts (SS) 20/10/2021 2