Bill 59, Rare Disease Strategy Act, 2025

Summary#

• This bill would require the Ontario government to carry out the recommendations from the Rare Diseases Working Group Report (dated March 10, 2017).

• It also requires public progress updates every six months until all recommendations are in place.

• Key points:

  • The government must implement the report’s recommendations “as soon as is practicable” (as soon as reasonably possible).
  • Public updates must be posted online six months after the law takes effect, and every six months after that, showing what is done and what is left.
  • The bill does not set a budget or a specific deadline for completing all actions.
  • It uses the 2017 report as the plan for Ontario’s rare disease strategy.
  • It takes effect once it receives Royal Assent (becomes law).

What it means for you#

• People living with rare diseases and families:

  • Over time, you could see better access to diagnosis, treatment, and coordinated care, based on the 2017 report’s recommendations.
  • You can track the government’s progress through required six‑month updates.
  • Changes will not be immediate; programs and services would roll out over time.

• Health care providers:

  • You may see new guidance, referral pathways, or centers of expertise for rare diseases.
  • There may be new reporting or data efforts to track outcomes and access.

• Patient advocates and researchers:

  • Regular public updates create a clear way to hold government accountable.
  • A province‑wide strategy could support clinical trials, registries, and data sharing.

• Taxpayers:

  • Implementing a rare disease strategy will likely require new funding, but the bill does not state amounts.
  • Public updates provide transparency on what is being done and how resources are used.

Expenses#

No publicly available information.

Proponents' View#

• Ontario has no rare disease strategy; this bill would finally turn a 2017 plan into action.
• Regular public updates increase transparency and accountability.
• Earlier diagnosis and coordinated care can improve quality of life and may reduce emergency visits and hospital stays.
• A clear strategy could make access to rare‑disease care and medicines more consistent across the province.
• Using an existing expert report avoids starting from scratch and speeds up implementation.

Opponents' View#

• “As soon as practicable” is vague and sets no firm timeline or completion date.
• Tying the plan to a 2017 report could lock in recommendations that may be outdated.
• Costs are open‑ended; the bill provides no budget, funding source, or cost controls.
• The law mandates action but gives few details on how to prioritize steps or measure results.
• Some worry it could duplicate federal or other provincial work, adding red tape without clear benefits.