Chief Executive Officer – Remote / Work from Home

About SWAN Australia

Syndromes Without A Name (SWAN) Australia is a national organisation and not-for-profit charity that provides information, support, connection and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition. SWAN facilitates peer support events, information sessions and networking opportunities to help SWAN families connect and reduce the pain of isolation, frustration, and anxiety. 

SWAN advocates for increased funding for genetic research, free and equitable access to genomic testing and decreased waiting periods. We provide a public voice for our families, campaigning for improved disability support services, better community education and greater resources and pathways so that SWAN children can thrive.   

SWAN was established in 2012, as a not-for-profit incorporation and charity and is the peak organisation supporting and advocating for SWAN families at a national level. We estimate that 50 children are born with an undiagnosed or rare genetic condition in Australia every week.

About the Role

The CEO is responsible for overseeing the management of SWAN Australia. SWAN is a small team so the CEO position is required to have a hands-on approach and is heavily involved with the day-to-day operations of the organisation.

The SWAN organisation structure consists of the SWAN Board in which the CEO is ex-officio, an administration officer, bookkeeper, and a number of volunteers.

The CEO is responsible for developing a three-year strategic plan together with the SWAN Board with input from SWAN Members. They are responsible for the delivery of SWAN’s vision, mission and implementing the strategic plan, ensuring we meet our strategic objectives, and developing and implementing the business plan. They are responsible for the long-term sustainability of SWAN as a successful organisation.

The CEO needs to demonstrate strong leadership and organisation skills, together with excellent communication and networking skills. This will ensure that SWAN membership numbers continue to grow and awareness is raised among health and disability professionals.

The CEO reports directly to the SWAN Board.

Terms of Employment

The CEO role is required to work 22.8 hours per week in a permanent part-time position. The work hours do require some flexibility around structured meetings, however the CEO will have the autonomy to manage their remaining working hours to perform their duties throughout the week. Some interstate travel may be required in this role.

The CEO is required to adhere to all SWAN policies and procedures.

Location of Work

The CEO will largely work from their home as SWAN operates under the virtual office model. Some activities and meetings will be required to attend in person outside the virtual office environment. These may include local or interstate meetings/conferences with SWAN members, health professionals, charities or politicians. You are expected to maintain a safe work environment at all times. It will be your responsibility to minimise health and safety risks and follow SWAN’s Working Alone Policy and Workplace Health and Safety Policy.

Duties and Responsibilities

Grants and Fundraising

• Apply for grants which enable SWAN to carry out its strategic objectives.
• Be responsible for initiating many of SWAN’s fundraising activities and overseeing them, ensuring they are performed in an ethical, safe and legal manner.

Advocacy

• Lobby politicians and other decision makers including the Dept of Health and Dept of Social Services, to advocate for better health and disability supports for our members.
• Participate in health consultations such as but not limited to the Therapeutic Goods Administration (TGA) and Medical Services Advisory Committee (MSAC) applications.
• Engage in systemic advocacy around health and disability issues (time permitting).

Awareness Raising

• Engage in awareness-raising activities, including presentations to health students and others who could benefit from understanding the work of SWAN in supporting our members and potential members.
• Participate as a consumer representative on a range of health, disability and genomics committees to represent the SWAN voice as a way of advocating for better supports for our members.

Business Development

• Ensure the delivery of SWAN’s vision and missions by implementing the strategic plan, ensuring we meet our strategic objectives, and developing and implementing the business plan.
• Look for business opportunities that have the potential to benefit SWAN as an organisation and our members.

Databases

• Ensure SWAN’s database hosted in Dynamics 365 can accurately record the information SWAN needs it to in order to support members.

Events

• Organise or delegate the facilitation of a range of different SWAN events such as virtual informal events, events, information sessions and face-to-face events.
• Organise and or oversee the coordination and running of SWAN’s two major awareness days each year – Rare Disease Day and Undiagnosed Children’s Awareness Day.

Finance

• Liaise with SWAN’s bookkeeper and Treasurer with regards to budgets and grant reconciliations.
• Ensure SWAN pays and is in a financial position to pay all debtors in a timely manner.

Marketing

• Develop or oversee any new marketing material for SWAN as required.
• Ensure branding is adhered to and templates developed where lacking or in need of a revamp to become more appealing across SWAN’s marketing platforms.
• Ensure SWAN’s current marketing platforms and collateral remains current accessible.
• Provide communication and marketing strategies to engage a wider network of members both families and professionals (clinicians and allied health workers).

Media

• Represent SWAN in the media or nominate SWAN families to share their stories and advocacy issues on behalf of SWAN.
• Continue to foster SWAN’s current relationships with media contacts.
• Look for opportunities to promote awareness of SWAN in the media.

Partnerships

• Foster opportunities for partnerships with industry, other rare genetic support groups, government and collaborations such as the Genetic Undiagnosed and Rare Disease Collaborative Australia, which SWAN is a part of.

Peer Support

• Empower families through peer support opportunities ensuring they are connected with other members for peer support with the likes of children with the same condition, similar age or location.
• Share information and knowledge with SWAN members in relation to disability, health and education so they can further support their SWAN children.
• Ensure in some capacity that SWAN offers support to members, particularly in relation to peer support, including but not limited to parents whose children have the same genetic condition, children of similar age and those residing in the same region.
• Organise or delegate the facilitation of education sessions and ensure families have every opportunity to connect with other members for peer support.
• Provide emotional support within the scope of practice, referring families to appropriate professional help if they are in need or in crisis.

Professional Development

• Participate in professional development opportunities where appropriate to develop new skills.

Projects

• Write letters of support for research projects that align with SWAN’s values or advocacy work when requested by other organisations.
• Collaborate with like-minded organisations on projects as they arise if they are beneficial to SWAN as an organisation and our members.
• Ensure that SWAN can continue to expand its hospital care packs program to support members.

Social Media, Website and Newsletter

• Oversee SWAN’s social media engagement including being active and creating posts on social media, approving and posting in the SWAN’s administration officer’s absence.
• Ensure the SWAN website content stays relevant and without glitches.
• Write a report for the SWAN monthly newsletter and oversee the content in it prior to it being sent.

Staff Training and Volunteer Management

• Be responsible for training and onboarding new staff members and volunteers.

SWAN Board and Community Advisory Group

• Report on SWAN’s activities at every Board meeting and identify any issues that need the Board’s attention.
• Attend every board meeting as an ex-officio of the board.
• Ensure SWAN policies and procedures and risk management documents remain relevant and up to date.
• Liaise with board members to establish an agenda prior to board meetings
• Ensure all legal reporting and requirements are adhered to on behalf of SWAN, ensuring charitable status is current and reported on, and fundraising requirements are followed.
• Ensure SWAN’s Community Advisory Group (CAG) meets on a regular basis and follows their terms of reference. Advertise and interview new CAG members as required.

Essential Selection Criteria

• Minimum of two years’ experience in working in the healthcare, genetics or disability sector or not-for-profit organisation.
• Excellent communication skills (both verbal and written), including active listening skills and attention to detail to enhance client-centred support. Including outstanding stakeholder engagement and networking skills.
• Exemplary interpersonal skills, including the ability to network with people of diverse ages and backgrounds.
• Proven track record of fundraising and grant writing success.
• Proactive and enthusiastic passionate person who wants to give back to an organisation that makes a difference to the undiagnosed and rare genetic condition community.
• Demonstrate initiative and self-motivation and hard work with the ability to work with direction and/or autonomously.
• Experience in posting and moderating social media sites, updating websites including SEO and metadata and keywords including utilising analytical data to maximise reach.
• Excellent IT skills and the ability to use a variety of programs.
• A flexible approach with regards to hours of work and ability to manage your own work time and the ability to prioritise, tasks and achieve deadlines.
• Ability to direct, collaborate and corporate with SWAN staff, the board and volunteers and adapt to the different working styles of others.
• Ability to work under pressure and prioritise workload in response to time frames and deadlines, including identifying and resolving or seeking support to resolve problems in a timely manner.
• Prior evidence of providing peer support within a health or disability support group.
• Demonstrated experience in providing advice to government and developing and implementing advocacy campaigns.
• Well-versed in writing submission and position statements on issues of concern for SWAN families.
• Tertiary qualifications in policy, business, health or social science.
• Ability to obtain Working with Children Check, First Aid, Mental Health First Aid and Police check.

Desirable Selection Requirements

• Experience using software – Microsoft Office 365, Microsoft Dynamics 365, Zoom, Canva, Mailchimp, Black Magic Design – DaVinci Resolve and WordPress.
• Have an understanding/and or lived experience of disability, genetic or chronic health conditions.

How to apply

Please apply now through Ethical Jobs. Applicants are required to submit a CV and cover letter which addresses the essential selection criteria. Applications may be addressed to Steve Robinson (SWAN Chair).

Please note – we will proceed with interviews prior to the closing date. Only shortlisted candidates will be contacted.

For further information, please contact Maya (SWAN Administration Officer) at [email protected] using the subject line: Chief Executive Officer – Remote / Work from Home enquiry via EthicalJobs, or 0466 122 290.

A position description is attached.