Goal01
A Provincial Rare Disease Strategy
Implementation of Canada's National Strategy at the Ontario level — with funding, accountability and patient governance built in from the start.
Home/ Advocacy
What we are fighting for.
Six commitments shape every meeting, every brief, and every campaign we bring to Queen's Park. They were written by patients and caregivers — and they're updated each year alongside our community.
Goal02
Faster, fairer diagnosis
Universal newborn screening expansion and reimbursed genetic testing, so families don't wait years for answers.
Goal03
Equitable drug access
A transparent, patient-informed reimbursement pathway for rare-disease therapies — including pediatric and ultra-rare medications.
Goal04
Caregiver and family supports
Recognition of unpaid caregivers in provincial labour and benefit policy, including respite and mental-health funding.
Goal05
Coordinated, multidisciplinary care
Designated Centres of Expertise across Ontario so rural and northern patients receive the same standard of care as those in the GTA.
Goal06
Research investment
Dedicated provincial funding for rare-disease research, registries and patient-reported outcome programs.
Progress tracker
Where each file stands.
We are building a provincial progress report card on how patient advocacy is shaping stronger policy for the rare disease community and where it's stuck. Stay tuned for our first report.
Want to put your name behind this work?
Sign on as a community supporter, write to your MPP using our templates, or join one of our advocacy working groups.