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Amersham, Buckinghamshire (Hybrid)
Greater London
£50,000 per year
Full-time or part-time
Permanent
Job description

Cardiomyopathy UK is the specialist national charity for people affected by cardiomyopathy, a group of conditions that affect the heart muscle. It can have a devastating impact on the lives of people of all ages and is usually inherited. Our vision is that everyone affected by cardiomyopathy should live a long and fulfilling life.

We are midway through our five-year strategic plan, at a genuinely exciting moment, both for the charity and for cardiomyopathy more broadly. The treatment landscape has been transformed in recent years: approved dedicated therapies are now available, more are in the pipeline, and the first genetic treatments are on the horizon. This is bringing new energy and investment from clinicians, pharmaceutical companies and the research community, creating real opportunities for a charity with the credibility, evidence base and relationships to make the most of them. Our evidence base is stronger than ever: we have completed the James Lind Alliance Priority Setting Partnership, surveyed over 1,300 people affected by cardiomyopathy, and published our State of the Nation report. Against a rapidly shifting NHS and policy landscape, we are now reviewing our priorities and sharpening our focus on where we can have the greatest impact.

For the right person, this is an opportunity with real strategic scope. We want to build on our strong policy positions and evidence base and translate them into proactive campaigning and influencing, moving from good policy thinking to concerted public affairs activity, strategic stakeholder engagement, and campaigns that achieve real change. We have a draft theory of change to refine and policy recommendations to turn into action. Our Change Makers volunteer advocacy network is central to this, but needs dedicated leadership to fulfil its potential; rebuilding it is one of the most important early priorities for the post-holder.

Our research programme reflects this momentum. The James Lind Alliance process established the top ten research priorities for cardiomyopathy, giving us a clear, credible basis for directing research attention and resource. We have launched our Catalyst Grants scheme, the charity's first foray into directly funding research, with a second round under way, and want to build on it. That means resourcing the scheme sustainably, deepening engagement with the research community through a growing researcher network, and establishing an annual researchers' event to bring the community together and identify collaboration opportunities. The Director will lead this next phase, working with the Research Manager and our clinical and academic partners to define and deliver our ambitions.

Raising awareness of cardiomyopathy, its signs, symptoms and genetic risk, is equally central to our mission. Too many people are still diagnosed late because neither they nor their GP knew what to look for. We want our communications work to drive this agenda purposefully, drawing on our own evidence about diagnostic delay and unmet need.

We are also looking for someone who can work alongside our fundraising team to sustain and grow this work. Securing dedicated funding for our research grants programme and advocacy work is a real priority, and the changing landscape, with greater pharmaceutical interest in cardiomyopathy than ever, creates new opportunities alongside more traditional trust and grant funding. Experience of developing compelling cases for support, and/or navigating partnerships with commercial organisations in a way that protects the charity's independence, would be a significant asset.

The Director of Research and External Affairs leads the charity's research, policy and advocacy, and communications and marketing functions, with a team of four staff. The post-holder sets the strategic direction of the directorate, drives high-quality delivery,  upholds the charity's values, and represents the charity externally across research, policy, clinical and funder networks. The Director is a member of the charity's Leadership Team, working closely with the CEO to steer the charity forward.

Application resources
Application Instructions

Please apply with CV and cover letter, tailored to the role (please see the person spec in the attachment)

First round interviews are scheduled to take place 20th/21st July
Second round interviews are scheduled to take place 3-6th Aug

Please note candidates will be asked to attend one interview in the Amersham office

We are happy to make any reasonable adjustments to the interview process - we will provide further details on this when contacting short-listed candidates.

Organisation
Cardiomyopathy UK View profile Organisation type Registered Charity Company size 11 - 20
Posted on: 26 June 2026
Closing date: 17 July 2026 at 09:00
Tags: Campaigns, Communications, Policy, Marketing, Advocacy, Health / Medical, Partnerships, Public Affairs, Research

The client requests no contact from agencies or media sales.