An exciting opportunity for a highly motivated advocacy professional to make a meaningful impact for those affected by EB in Ireland.
Title: Head of Advocacy and Policy
Reporting to: CEO
Type of Contract: Full Time, Permanent, 37.5 hours per week.
Salary: €55,000 - €60,000, commensurate with experience.
Location: Flexible working is facilitated and embraced. Debra's office is based at Butterfly Cottage, 8 Clanwilliam Terrace, Dublin 2.
Debra is a national charity established in 1988 to provide support and drive research into treatments for those living with the rare skin condition, Epidermolysis Bullosa (EB). EB is an extremely painful skin-blistering condition, which leaves the skin as fragile as the wings of a butterfly.
We are a person-led charity, with an ambitious and passionate team, who care deeply about the people we work with. We actively live our core values of Togetherness, Person-Centredness, Passion, Boldness and Integrity, with people at the heart of everything we do.
Debra is in the middle of implementing an ambitious three-year advocacy plan as part of its organisational strategy. This advocacy plan focuses on developing our capacity as an advocacy organisation, ensuring the voice of people living with or caring for someone with EB is engaged and amplified across advocacy messages, implementing a series of campaigns and projects to achieve our policy priorities, and developing a network of political EB champions.
A member of the Senior Management Team, the Head of Advocacy and Policy will be responsible for leading Debra's advocacy and policy work and for the development of all advocacy campaigns. This presents an exciting opportunity for a highly motivated advocacy professional to make a meaningful impact for those affected by EB in Ireland.
Main Duties and Responsibilities
Drive and implement Debra's advocacy strategy.
Monitor and continuously assess progress and adjust advocacy strategy as required.
Lead the development of all Debra advocacy campaigns and drive campaigns from start to finish, including evaluation. Such campaigns may include an annual pre-budget submission campaign, Election 2025 campaign and a campaign on access to medicines.
Communicate advocacy campaigns and successes to key stakeholders, including people impacted by EB.
Work closely with the family support team to ensure advocacy campaigns reflect the needs of people living with or caring for someone with EB.
Work closely with the research team in commissioning and overseeing evidence generation to support access to better services and treatments for those living with EB.
Work closely with the communications team to develop campaign material and collateral and drive media and digital engagement.
Manage the delivery of the 'Butterfly Review', a cross-functional research project reviewing access to EB services and supports and developing a blueprint for the future of services in Ireland.
Lead the organisation's submissions and campaigns around access to medicines.
Develop and maintain a diverse network of political and policy contacts and champions.
Contribute to national advocacy forums and policy development.
Engage with Debra International and other groups at an international level.
Ensure adherence to the Regulation of Lobbying Act 2015 and make required returns.
Develop internal Debra policies relating to advocacy.
Act as a member of the Senior Management Team and present to the Debra Board as required.
Manage and support the work of Debra's Policy Officer.
Manage the advocacy budget.
Carry out other roles or duties as are within the scope, spirit and purpose of the post, as requested.
Person Specification
A minimum of 5 years’ experience in a related advocacy / campaigning field.
Degree level qualification and postgraduate qualification in a related field.
Experience of developing advocacy campaigns through stakeholder engagement.
Strong knowledge of the Irish political environment, with a distinct advantage if this is in the area of health or disability.
A clear ability to communicate concisely and directly in an accessible manner via a range of platforms and to varied audiences.
Exceptional project management and computer skills, with excellent attention to detail.
Flexibility to occasionally travel and work outside standard hours.
Fluency in written and spoken English.
Personal Attributes
Personable, with excellent communication skills and an ability to build relationships and work with professionals at all levels.
Self-motivated, highly capable of working independently and with a strong work ethic.
Disciplined, organised and thorough.
Strong empathetic nature, with a genuine passion and care for people impacted by EB.
Benefits
Annual leave of 25 days.
Five discretionary leave days: Good Friday, Christmas Eve, working days between Christmas and New Year.
Employer matched Pension Scheme up to 6%, following 6-month probationary period.
Employee Assistance Programme.
Bike to Work Scheme.
Opportunity for flexible/hybrid working.
Please email your CV and accompanying cover letter outlining your suitability for the role to info@debra.ie by 5pm on Friday, 8th December 2023, with subject line as follows: First Name Last Name - Head of Advocacy and Policy.
Position is subject to Garda Clearance and reference check. Candidates must be legally entitled to work in Ireland at the time of application. Debra is an equal opportunities employer. Management reserve the right to amend or change this job description as required.