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Advocacy connects lived experience, community energy, and evidence — and that combination changes policy, funding, trial access and the culture of research. Whether you’re a patient, parent, caregiver, or ally, you can make a measurable difference for children, adolescents and young adults with cancer. This is about moving research forward — ethically, effectively, and inclusively.
Shapes research priorities to reflect issues of access, equity, quality of life, survivorship and patient-centred care.
Increases funding and infrastructure for pediatric oncology research and clinical trials.
Removes barriers throughout the entire research continuum - from bench science, to opening clinical trials, and all the way to drug/treatment approval.
Improves recruitment and retention in clinical trials (more inclusive eligibility, patient-friendly scheduling, travel supports).
Raises awareness about the necessary policy change to address unmet needs in pediatric oncology care and research.
Get familiar with common research terms: clinical trial phases, informed consent, outcome measures, IRB/REBs, endpoints (overall survival, progression-free survival, patient-reported outcomes).
Read plain-language summaries of pediatric oncology studies (hospitals and charities often publish summaries).
Sign up for webinars and educational sessions to learn more about the pediatric oncology landscape.
Decide how much of your story you are comfortable sharing. Are there details you need to change to protect your family's privacy?
If you are sharing another family's story, make sure you have their consent first. Each time you share the story, ask permission since situations and contexts change.
Join the monthly Ac2orn (Advocacy for Canadian Childhood Oncology Research Network) virtual meetings.
If your experience is within young adult oncology, reach out to AYA Can to become part of their network.
Join or ask to sit on patient/family advisory boards at hospitals, research networks, or foundations.
Identify people and roles within government. Determine who is responsible for decision making and who/what roles will help inform their decision making:
Ministers
Key bureaucrats
Senators
Cabinet Minsters
The Prime Minister's Office
Opposition critics
Parliamentary committees
Caucs
Identify organizations and individuals who operate within the childhood cancer space that can help with introductions and make connections.
Learn more about the person you are meeting with - what are their concerns, priorities, and competing pressures?
Know your audience. Researchers want data and feasibility, policymakers want impact and costs, but everyone needs to hear your story.
If you are meeting with a government official, align your issues to their priorities. Identify priorities through: mandate letters, throne speeches, news stories, budgets, question period, etc.
If you are making a formal request for action or funding, make this message very clear, concrete, and direct. Do not ask for more than three priority items and it may be best to focus on only one.
When doing your research, note the language and make sure that you use key words in your meeting (e.g., "innovation", "sustainability", "efficiency", "return on investment", etc.)
Use visuals: pictures, a patient journey map, etc.
Read what other childhood cancer organizations and advocates are saying - try to use some similar language. It is important for people to hear the same messages.
Approach the meeting as if you are trying to build a partnership. Only going in with demands will not develop the trust or relationship needed to make a difference.
Practice what you will say in the meeting. Make sure you feel prepared before you walk into the room.
Write op-eds, give interviews, use social media and local events to raise awareness and pressure funders/policy makers.
Get your workplace involved - organize a fundraiser, create a meal train for a family in treatment, hold a toy drive for your local hospital, write an article for your workplace newsletter, and more!
Keep messaging hopeful but honest.
Invite government officials and other key individuals to your events. Provide them with the opportunity to speak or take part in a meaningful activity (e.g., ribbon cutting).
Persistance is important - more than one meeting will be necessary.
Make sure to follow-up after the meeting with any promised documents or information, and a thank you note.
After each meeting or campaign, note what changed (policy language revised, pilot funding approved, appointment flows simplified).
Share wins publicly and recognized partners — it builds momentum and credibility.
Arrive early for your meeting. This is especially important if you have an in-person meeting with a government official as there may be security clearance required.
Dress for the meeting.
Request a photo and ask permission to share the photo on social media.
Be organized. Have all of your materials ready.
Prepare for counter-points.
Not every meeting will go perfectly. Don't let this discourage you. You will learn something from every meeting that will help you further craft your message for your next meeting.