Your voice has power. Use it.
Change doesn't happen by accident. We work to make sure the people most affected by health policy have a real seat at the table — and you can help.
Better care starts with better policy.
Our advocacy work is grounded in the lived experience of people with blood disorders. We push for systemic change in three core areas.
Disability Incentives
Many people living with chronic blood disorders face significant barriers to employment and financial stability. We work with policymakers to ensure that disability incentives are accessible, fair, and responsive to the realities of living with a chronic condition.
Emergency Room Experience
Patients with sickle cell disease often face long waits, lack of pain management, and dismissive treatment in emergency rooms. We partner with healthcare advocates to document these experiences and push for systemic change — because no one should have to fight for care in a crisis.
Equitable Access to Care
Access to treatment, specialists, and pain management isn't equal across communities. We advocate for policies that address disparities in healthcare access, particularly for Black and immigrant populations who face systemic barriers to quality care.
“The decisions made in policy rooms today determine whether someone gets the care they need tomorrow.”
What we're working on right now.
Advocacy is slow, and it often happens out of the public eye. But it's vital. Here's where we're currently focused.
Disability Incentives in Saskatchewan
We're drafting a position paper on disability incentives, highlighting the gaps in the current system and proposing concrete changes that would better support people living with chronic blood disorders.
Emergency Room Experience Survey
We're collecting stories from patients about their experiences in emergency rooms — the good, the bad, and the unacceptable. These stories will form the foundation of our advocacy work with health authorities.
Advocacy Update: Disability Incentives and Access to Care
Published November 1, 2025
One of our core pillars is advocacy — not as a one-time campaign, but as an ongoing commitment to making sure the people most affected by health policy have a real seat at the table.
Advocacy works best when it's a team effort.
You don't need to be a policy expert to make a difference. Here are practical ways you can contribute to our advocacy work.
Share Your Story
Your experience is the most powerful tool we have. Whether it's a struggle with the healthcare system, a barrier to accessing treatment, or a moment when you felt heard — your story helps us build a case for change.
Share your story →Write to Your MP
Politicians need to hear from people who are affected by the issues. A short, personal letter can make more of an impact than you'd think. We provide templates to make it easy.
Download a template →Join Our Advocacy Working Group
A small group of members who meet regularly to plan and execute advocacy campaigns. No experience needed — just a willingness to show up and learn.
Register your interest →