Project Support Officer – Research, Medical Affairs & Family Engagement

Location: Remote (Australia-based). As we are a remote office, you are expected to have your own laptop and cover the cost of your internet/broadband and daily stationery supplies if needed. 

Reporting to: Direct Report: General Manager. Works day to day with the Head of Research and Medical Affairs and the Family Support Coordinator

Hours: Part-time/Casual (approx. 20 hrs hours per week, with flexibility) / 6 month contract with possibility of extension. Must be available to work on Tuesday and Wednesday as a minimum.  

Remuneration: $38-$42 per hour, depending on skills and experience. SCHADS Award Level 4-5 (or equivalent depending on background and qualifications)

About BDSRA Australia

BDSRA Australia is a national not-for-profit organisation dedicated to supporting individuals and families affected by Batten disease - a group of rare, inherited neurodegenerative disorders that primarily affect children. We drive and fund research, advocate for best possible patient care and outcomes, provide practical family support, and connect families to resources and one another. As part of a highly active global network of Batten disease organisations, we collaborate with international researchers, clinicians, industry partners and other advocacy bodies to drive outcomes for the Batten disease community.

Why work with us?

With a 30-year legacy of impact and commitment to the Batten disease community, BDSRA Australia stands on a strong foundation and is poised for its next phase of growth, with national and international projects confirmed and funded. As a small but highly committed team, we offer the chance to work in a purpose-driven environment where your contribution directly impacts families affected by rare disease. You'll be part of a collaborative organisation that values empathy, innovation, and integrity.

Working with us means:

• Gaining experience across both Research and Medical, and Family Support functions
• Engaging with leading scientists, clinicians, and advocacy organisations around the world
• Playing a key role in shaping programs that bring hope and connection to affected families
• Enjoying flexible working conditions and a supportive, inclusive workplace culture

Whether you're looking to build your skills or bring your passion for science, health, and community to a meaningful cause, this is your chance to make a difference.

Position Overview

This is a flexible, part-time role supporting both the Head of Research and Medical Affairs and the Family Support Coordinator. The Project Support Officer will work across a range of initiatives, including scientific research support, grant development, community engagement, administration and coordination of family-focused events and communications.

This role offers a unique opportunity to contribute to both the scientific and human sides of rare disease advocacy, with exposure to international collaborations, research networks, and meaningful connections with families.

Key Responsibilities1. Research & Medical Affairs Support

• Assist the Head of Research and Medical Affairs in reviewing, summarising, and presenting scientific literature and clinical trial updates related to Batten disease and similar conditions.
• Maintain internal records of currently funded research projects, collaborations, and emerging treatments both domestically and internationally.
• Contribute to the preparation of grant applications
• Support the organisation of Scientific and Medical Advisory Board meetings, and other related stakeholder groups and meetings as necessary, including scheduling, minute-taking and meeting follow-up.
• Liaise with national and international researchers, clinicians, and biotech companies on project-related tasks.
• Other tasks as needed.

2. Family Support & Engagement

• Coordinate the quarterly Batten Bulletin newsletter, liaising with contributors and ensuring timely publication.
• Assist in the planning and delivery of family webinars, community events, and the annual Family Conference, including logistics and communications.
• Help manage and update family-facing resources across platforms such as the website, email lists, and social media.
• Support the Family Support Coordinator in responding to general family enquiries with compassion and professionalism.
• Provide project coordination and administrative support as required.
• Other tasks as needed.

Essential Criteria

• Tertiary qualification (or working towards one) in health, biomedical science, research, or a related field. 
• Excellent written communication skills, including the ability to translate scientific and medical concepts for general audiences.
• Strong time management and organisational skills, with the ability to meet deadlines and balance multiple responsibilities.
• Empathy and professionalism when working with families affected by serious illness.
• Confident using Google Suite and GMail, Microsoft Office, Mailchimp (or similar), Zoom, and online collaboration tools.
• Self-motivated with the ability to work independently in a remote work environment.

Desirable Criteria

• Knowledge of or interest in rare diseases, neuroscience, or Batten disease.
• Familiarity with PubMed, ClinicalTrials.gov, or similar scientific databases.
• Experience with research, research support, grant writing, or academic projects.
• Skills in design or publishing tools (e.g. Canva, Adobe Express).
• Experience in community services, not-for-profit, or advocacy sectors.

What We Offer

• Flexible, remote work arrangements tailored to your availability.
• The chance to work across impactful projects in both research and family support.
• Exposure to international research and clinical networks and grant development processes.
• A supportive, small team environment committed to improving lives.
• Casual hourly rate of $38 – $42 based on experience, plus superannuation.

To Apply:

Please send your CV and a brief cover letter addressing the key criteria to and the questions below. Answer as many as you like.

1. What experience do you have that is relevant to this role?
2. Provide 2 examples of administrative tasks that you have performed and the outcomes you’ve achieved. 
3. Have you ever written or helped produce a newsletter or similar publication? What was your process for gathering content and coordinating contributors?
4. Can you describe your experience with reading and summarising scientific or medical literature?
5. How would you explain a complex medical concept (like gene therapy or neurodegeneration) to a non-medical audience, such as a parent or carer?
6. This is a dual-role position with competing priorities. How would you structure your time to manage tasks for both the Head of Research and the Family Support Coordinator?

Applications will be reviewed as received.