- Lead a purpose-driven national not-for-profit organisation
- Are you an experienced not-for-profit leader ready to make a meaningful difference in the lives of individuals and families facing complex health challenges?
- Do you bring the operational leadership, financial management and relationship-building skills to help a small organisation grow and thrive?
- Are you passionate about building strong partnerships, securing funding and turning strategic priorities into practical outcomes?

We are recruiting on behalf of a national not-for-profit organisation seeking an experienced and collaborative Chief Executive Officer to lead its operations, strengthen financial sustainability and expand its reach and impact.

About the Opportunity…
Reporting to the Management Committee, this is an exciting opportunity to lead a small, purpose-driven organisation supporting individuals and families affected by rare and complex health conditions.

As CEO, you'll translate the Committee's strategic direction into practical plans and outcomes, while providing hands-on leadership across people, programs, operations, funding and stakeholder engagement.

Key responsibilities include:

- Leading and supporting employees and volunteers to deliver high-quality, responsive services
- Overseeing day-to-day operations, budgets, compliance and organisational performance
- Identifying, developing and securing grants, donations, fundraising and other funding opportunities to support ongoing services and organisational sustainability
- Building strategic relationships with medical professionals, researchers, health and disability services, government, corporate partners, donors and other stakeholders
- Strengthening the organisation's national profile, community awareness and referral pathways
- Identifying opportunities to expand services, partnerships and support for individuals and families
- Working closely with the Management Committee to implement strategic priorities, provide reporting and support effective governance

This is a hands-on and highly varied executive leadership role for someone who enjoys working within a small organisation, balancing strategic leadership with practical implementation, and building the relationships and resources needed to make a genuine difference.

The details…

- Part Time
- 22.8 hours per week
- SCHADS Award Level 8
- Remote position

About the organisation…




Our client is a national not-for-profit organisation dedicated to supporting individuals and families affected by rare and complex health conditions.

Through family advocacy, peer support, information and connections to specialist services, the organisation helps individuals and families navigate challenging circumstances, access appropriate support and feel less alone.

Working closely with families, health professionals, researchers and community partners, the organisation is committed to increasing awareness, strengthening support services and improving outcomes for the people it serves.

With an established foundation and opportunities for further growth, the organisation is entering an important next chapter focused on strengthening its operations, financial sustainability and national impact.

If this is the kind of organisation you'd be proud to lead, we'd love to hear from you.

What you'll need to succeed…
This role will suit an experienced and collaborative not-for-profit leader with strong operational, financial and people management skills, along with demonstrated capability in fundraising, grant writing and stakeholder engagement. The successful candidate will bring a practical, resourceful and hands-on approach, sound judgement and a genuine commitment to building a sustainable organisation that makes a meaningful difference in people's lives.

Selection Criteria…

- Tertiary qualifications in Business, Management, Finance, Community Services, Social Work or a related discipline, and/or substantial relevant experience
- Senior leadership or management experience in the not-for-profit sector, overseeing multiple organisational functions including people, programs, finance, funding and stakeholder engagement
- Demonstrated ability to lead employees, manage performance and build an effective team
- Experience overseeing service delivery, evaluating outcomes and driving continuous improvement
- Sound financial management skills, including budgeting, financial reporting and resource management
- Experience securing or progressing grants,



fundraising and other funding opportunities to support organisational sustainability
- Experience working with a Board or Management Committee, including reporting, recommendations and understanding governance responsibilities
- Solid stakeholder engagement and relationship-building skills, including representing an organisation externally
- Ability to develop practical systems, processes and structure to support organisational growth
- Excellent written and verbal communication skills, including preparing reports, submissions and recommendations
- Sound judgement, initiative and adaptability, with the ability to balance strategic and hands-on responsibilities in a small organisation
- Willingness to develop a basic understanding of rare and complex health conditions and the needs of affected individuals and families

Highly regarded: Experience within the health, disability or related not-for-profit sector; knowledge of government, research or community-sector networks; and experience managing funded programs and reporting requirements.

Why join this organisation?

- Lead a national not-for-profit organisation making a meaningful difference to individuals and families
- Opportunity to shape organisational growth, sustainability and future direction
- Build influential relationships across the health, disability, research and community sectors
- Work closely with a committed Management Committee and dedicated team
- Enjoy a varied, hands-on executive leadership role
- Remote working arrangement
- Purpose-driven work with genuine community impact

What to do now…
Recruitment of this role is being managed by an external recruitment agency – Aster HR.

To respect the confidentiality of the organisation during the initial recruitment stages, further details will be shared with suitable candidates as the process progresses.

There is an Information Package available if you want more information (including the Job Description). You can find that here:
https://tinyurl.com/yc6yt44z
or call us on (02) 4555 4634 for a confidential discussion.

When you’re ready to apply please don’t just send us your resume – let us know a little more about you by including a cover letter (either written or video) that tells us how you’re able to meet each of the criteria.

Closing date: COB (5pm) Monday 2nd November 2026

All applicants will be required to provide current clearance of an NSW Working with Children Check and undergo a Police Check.

📌 Chief Executive Officer (Sydney)
🏢 Aster HR
📍 Sydney