About Long COVID Action Canada

Turn evidence into action.

Long COVID Action Canada is a patient-led initiative seeking research and effective treatments, accessible care, and recognition and support for people with Long COVID across Canada.

Why LCAC exists

People affected by Long COVID need meaningful ways to influence the decisions that shape their lives. LCAC brings evidence and lived experience together to make clear demands of the people who can act.

We make it easier to take action and follow what happens next, with dated campaign updates and correspondence we have permission to share.

What we’re seeking

Better lives for people with Long COVID.

Three core goals guide our advocacy. Each campaign is a practical step toward one or more of them.

Research and effective treatments

Research that explains Long COVID, improves diagnosis and leads to effective treatments.

Biomedical research that addresses the complexity of Long COVID.
Rigorous treatment trials with meaningful outcomes and strong participant protections.
A clear path from promising findings to treatments people can access.

Accessible care

Timely assessment, knowledgeable clinicians and ongoing support.

Clear referral pathways, so people know where to turn.
Care that takes symptoms and limitations seriously.
Services that accommodate disability, limited energy and difficulty travelling.

Recognition and support

Policies that address disability, income, work, education and daily living.

Recognition of Long COVID’s impact on people’s ability to function.
Accessible disability and income supports, with appropriate accommodations.
Concrete commitments from governments and institutions, followed by action.

See how our campaigns pursue these goals →

Principles we advocate for and practise

We seek these standards from governments and institutions, and apply them to our own advocacy.

Transparency

Make evidence, funding, decisions and uncertainties open and understandable.

Accountability

Take responsibility for decisions, follow through on commitments and explain progress or setbacks.

Patient involvement

Give people with Long COVID a meaningful role in setting priorities, shaping decisions and evaluating outcomes.

In practice, we identify an opportunity for change, check the evidence, make a clear request and offer practical ways to support it. Then we follow up and publish what happens.

Who’s behind LCAC

Robert DeRosa founded Long COVID Action Canada. A former teacher and marathon runner, he has lived with Long COVID since early 2020. He has spoken publicly about his experience to raise awareness and advocate for access to care.

Robert currently develops the campaigns, maintains the website and follows up on requests. LCAC is building a network of people with Long COVID, allies and collaborators who can contribute when they can.

Research, advocacy and professional background

United States National Institutes of Health (NIH) RECOVER initiative: patient representative on the Community Advisory Group; peer reviewer for RECOVER Long COVID ancillary studies; member of the RECOVER-Treating Long COVID (RECOVER-TLC) Community Advisory Board; co-author of RECOVER research publications on postural orthostatic tachycardia syndrome (POTS) and electrocardiography (ECG).
Community Engagement Alliance Consultative Resource (CEACR): lived-experience expert panellist for this NIH-supported program at the University of Pittsburgh.
Canadian COVID Society: Long COVID Committee member; helped shape patient advocacy priorities and calls for better care and disability support; helped organize and deliver International Long COVID Awareness Day events.
Living with Long COVID exhibition: Community Advisory Group member and contributor to the exhibition, co-produced by Simon Fraser University’s Faculty of Health Sciences and the Museum of Vancouver.
Background: master’s in public policy from the National University of Singapore, with a specialization in social, environmental and urban policy; former international educator in Japan and Singapore.

Robert DeRosa wearing a respirator beside the Living with Long COVID exhibition displays at the Museum of Vancouver. — **Robert DeRosa**
Long COVID Community Advisory Group member

Robert has shared his experience with CBC News, The Hamilton Spectator and The Sick Times. See the coverage.

Take part in a way that works for you.

Long COVID already asks enough of the people living with it. An idea, a two-minute action or help with a specific task all count.

Take action Join LCAC Suggest an issue

Support our work

Robert currently covers LCAC’s running costs. Optional contributions help support the website and advocacy work. Choose an amount that works for you.

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