Advocacy & CF CAN
Welcome to CF CAN: Cystic Fibrosis Community Advocacy Network
Empowering the cystic fibrosis community to create change
What is CF CAN?
CF CAN (Cystic Fibrosis Community Advocacy Network) is a national program uniting patients, carers, and supporters to become skilled advocates for the cystic fibrosis community. Whether you’re new to advocacy or already making an impact, this program equips you with the knowledge and tools to make a difference.
Program Overview
Our training program is divided into 7 key modules, plus a final wrap-up session. Each module is between 45 minutes to one hour and can be delivered across one day or weekly hour sessions.
Module 1: Introduction to CF CAN
Topics Covered:
What is CF CAN?
A grassroots network of individuals affected by cystic fibrosis advocating for systemic change, better care, and stronger community voices.
Purpose and Vision
Promote equitable access, amplify patient voices, and influence policy that improves lives.
Success stories
Real examples of cystic fibrosis policy change, drug approvals, and access wins led by advocates.
Mission and Values
Inclusivity, respect, collaboration, evidence-based action, and lived experience leadership.
CF CAN Code of Conduct
Expectations for respectful engagement, maintaining confidentiality, and responsible advocacy.
Module 2: Understanding Cystic Fibrosis (CF)
Topics Covered:
What is CF?
Overview of CFTR gene, mutation classes, and disease mechanics.
Common challenges in daily life
Medication burden, hospitalisations, mental health, transition to adult care, infection control, and social isolation.
Access to therapies
Disparities in accessing modulators, transplant services, and clinical trials.
Global and local statistics
Incidence, longevity rates, access gaps in different regions.
Intersectionality
Demographics: income, geography, and disability status affect cystic fibrosis care.
Module 3: Becoming an Advocate
Topics Covered:
What is patient advocacy?
Advocacy defined across levels: self-advocacy, community engagement, policy influence.
Why your voice matters
Data is powerful—but lived experience drives action and human connection.
Ways to advocate
Storytelling, lobbying, volunteering, speaking at events, supporting legislation, joining boards.
How to start
Identifying your motivation, setting goals, picking your issue.
Ethical considerations
Speaking for vs. speaking with communities, ensuring you represent others responsibly.
Module 4: Communication Skills for Advocacy
Topics Covered:
Telling your story effectively
Components: background, challenge, turning point, call to action.
Public speaking tips
Using pacing, tone, and nonverbal communication. Handling nerves.
Writing letters and op-eds
Advocacy email templates, persuasive writing structure, emotional appeal + data.
Using social media for advocacy
Platforms (Instagram, X, TikTok, LinkedIn), creating shareable content, avoiding disinformation.
Speaking to media
Interview preparation, staying on message, creating sound bites.
Module 5: Navigating Health Systems and Policy
Topics Covered:
Healthcare rights and entitlements
Informed consent, second opinions, financial supports, privacy laws (
Healthcare System 101
How hospitals and government agencies interact.
Drug access pathways
How new treatments get approved (clinical trials, TGA, PBS, HTA)
Policy and advocacy targets
Who you should talk to? MPs, Ministers of Health, cystic fibrosis clinicians, funders.
Legislative processes
How are laws introduced and how public input can shape them.
Module 6: Making Change Happen
Topics Covered:
Creating a campaign
Issue identification, SMART goals, target audience, timeline.
Tools of the trade
Petitions, rallies, press releases, online engagement, community organizing.
Building coalitions
Working with cystic fibrosis organisations, disability groups, rare disease networks, and media.
Lobbying decision-makers
Scheduling meetings, prepping handouts, follow-up strategies.
Tracking impact
Metrics: social media reach, legislator response, policy shifts, patient outcomes.
Module 7: Self-Care for Advocates
Topics Covered:
Recognising burnout
Warning signs, compassion fatigue, advocacy trauma.
Setting boundaries
Knowing when to say no, protecting your personal time and health.
Sustainable advocacy
Rotating leadership, building a support team, celebrating wins.
Community care
Peer support groups, check-ins, safe spaces.
Mindfulness and resilience
Guided tools: journaling, meditation, therapy, wellness apps.
Program Completion
Upon completing the program, you will receive a Certificate of Completion, please remain active in your advocacy and you can do this through:
- Advocacy campaigns
- Peer mentoring
- Storytelling opportunities
- Community consultations
- Community Advisory Committee
CF CAN Advocacy Toolkit
On behalf of the Cystic Fibrosis Community Advocacy Network (CF CAN), thank you for championing health equity for people living with cystic fibrosis (CF).
This toolkit, based on CF CAN’s training content and lived experience insights, is designed to highlight the systemic inequities in cystic fibrosis care and amplify key messages of inclusion, access, and justice.
CF CAN is committed to dismantling ALL inequities when it comes to equitable access to healthcare and disability by empowering advocates with the tools to drive systemic change.
CF CAN’s policy and advocacy recommendations aim to:
Increase equitable access to care
- Advocate for equitable access to life-changing modulators, transplant services, and trial participation.
- Push for expansion of telehealth and outreach clinics, especially in remote and regional areas.
- Work to reduce financial barriers through funding for travel, accommodation, and out-of-pocket medical expenses.
Promote patient-centred, culturally safe care
- Elevate the voice of people with lived experience in shaping policies and care delivery.
- Incorporate shared decision-making models and support for carers and families.
Advance inclusive research
- Ensure clinical trials and data collection represent the diversity of Australia’s CF population.
- Partner with community groups to build trust and boost engagement in research.
Strengthen community support
- Build networks for peer support, mental health care, and carer inclusion.
- Tackle burnout through community-led wellness and self-advocacy resources.