Long COVID ActionCanada
A Patient-Led Initiative in Action

Canada declared the emergency over.It’s time for Canada to act on Long COVID.

We’re a small patient-led initiative in formation, working to advance research, improve care, shape policy, and make sure patient voices are impossible to ignore. It has been — days since the pandemic was declared.

One mark per day since 11 March 2020 Tap a mark for its date
— Day of the pandemicLast 365 days
Our mission

Turning lived experience into lasting change.

We are working for a future where no one in Canada with Long COVID is left without answers, care, or hope.

Long COVID Action Canada is a small patient-led initiative in formation. We are building toward a network of patients, caregivers, researchers, clinicians, and allies working for urgent, evidence-informed action across Canada. We advocate for research investment, treatment access, transparent decision-making, and policies grounded in the realities of people living with this illness.

If you work in research, care, or policy and want to collaborate, work with us.

Where we focus

Five priorities. One goal.

Better lives for people affected by Long COVID across Canada. These are the priorities we organise our work around as we get established.

  1. 01

    Research

    Champion ambitious, biomedical Long COVID research and treatment trials that match the scale and urgency of the crisis.

  2. 02

    Policy

    Turn lived experience and evidence into practical recommendations for governments, health systems, and funders.

  3. 03

    Advocacy

    Mobilize Canadians to call for better care, sustained investment, disability support, and meaningful action.

  4. 04

    Transparency

    Ask where resources go, how priorities are chosen, and whether research meets the standards patients deserve.

  5. 05

    Patient Voice

    Ensure people living with Long COVID help shape the decisions, studies, services, and policies that affect them.

Current campaign
Live now

Long COVID patients deserve better.

Pause McMaster’s Lightning Process trial pending an independent scientific, ethical, and patient-led review. The FALCON trial compares the commercially branded Lightning Process with activity pacing. We are calling for recruitment to pause until serious questions about the study’s design, transparency, participant protections, commercial relationships, and objective outcome measures have been independently addressed.

See what we’re asking for →
Take action
Sign the petition ↗

Trial record ↗
FALCON study summary ↗

Take action

Change starts when we act together.

If you might be interested in joining, or in taking part in new initiatives as they start up, add your name below. We’re a small initiative in formation — this is how we find the people who want to build it with us.

I am a … (tick all that apply)

We’ll only email you about Long COVID Action Canada, and only when there’s something worth saying. We don’t share or sell anything you give us, and you can ask us to delete it at any time. Privacy.

What joining means

  • No obligation. Adding your name is not a commitment to do anything. Plenty of people will only ever sign the odd petition, and that is genuinely useful.
  • Nothing frequent. We are all doing this while ill. Expect occasional email, not a newsletter.
  • Tell us your limits. If you can only do something small, or only on a good day, say so in the box — we will remember it.

Prefer email? Write to hello@longcovidaction.ca.