About Us

Our Values

At Long COVID Web, we are dedicated to fostering a community built on core values that shape our mission and approach. We embrace diversity, valuing the richness of individual backgrounds, experiences, and perspectives within the Long COVID community. Our commitment to equity, diversity, and inclusion (EDI) extends to actively addressing barriers like ableism and tokenism that hinder our collective goals.

Long COVID Web Structure

Long COVID Web operates on a dynamic and inclusive framework, fostering collaboration, knowledge exchange, and a holistic understanding within the community. Rooted in a commitment to diversity, equity, and inclusion, our organizational structure provides a welcoming space for individuals with diverse backgrounds and expertise. Prioritizing open communication, the framework encourages respectful dialogues and idea exchange. With a multidisciplinary approach, we acknowledge the importance of diverse perspectives in navigating the complexities of Long COVID.

Our structure emphasizes rigorous research, data-driven decision-making, transparency, and accountability. Long COVID Web serves as a cohesive and supportive platform, where innovation, empathy, and scientific rigor come together to advance knowledge and enhance outcomes for those affected by Long COVID.

Long COVID Web Pillars

Biomedical Team

The primary emphasis is on PCC pathogenic processes. Immune dysregulation, thrombosis, endothelial dysfunction, mitochondrial dysfunction, viral persistence, and microbiome alterations are among the primary potential processes identified by the World Health Organisation (WHO).

Our team will employ banked biospecimens from across Canada wherever possible. A standardised set of metrics, with standardised data collecting and reporting procedures, minimal data standards, and shortened permission processes, would enhance ongoing research efforts to understand illness causes and find PCC biomarkers.

Clinical Team

We will build a National Open Access Patient Registry as part of an improved sentinel surveillance strategy for PCC. Having a single, consistent point of entry for all PCC patient data would make it easier to obtain crucial data to inform urgently required research across all four pillars.

This includes both self-reported data and data from health-care systems, which can be obtained with a HIPPA and FIOPA-compliant app. In conjunction with Statistics Canada, we will build a standard approach of surveying PCC patients and their families, acquire insights on underserved populations, and undertake a nationwide longitudinal research to guide policy decisions in various regions.

Health Services

Understanding persons with PCC's long-term healthcare needs and how to best administer care to satisfy those needs is a focus across all health settings. Care gaps are significant, especially for priority populations such as elderly adults and children, people with multiple illnesses, people with disabilities, marginalised people, and rural residents.

Understanding how to close these healthcare gaps requires a nationwide, coordinated effort to optimise integrated care delivery and build care models within the constraints of existing reality and limited resources.

Population Health

Our goal is to build a National Open Access Patient Registry as part of an improved sentinel surveillance strategy for PCC. Having a single, consistent point of entry for all PCC patient data would make it easier to obtain crucial data to inform urgently required research across all four pillars.

This includes both self-reported data and data from health-care systems, which can be obtained with a HIPPA and FIOPA-compliant app. In conjunction with Statistics Canada, we will build a standard approach of surveying PCC patients and their families, acquire insights on underserved populations, and undertake a nationwide longitudinal research to guide policy decisions in various regions.

Land Acknowledgement

We acknowledge that the land on which we live, work, and gather is the traditional, ancestral, and unceded territory of the Indigenous peoples who have stewarded these lands for millennia. Across this vast and diverse expanse now known as Canada, we honour the First Nations, Métis, and Inuit communities who have lived in harmony with this land, water, and sky since time immemorial.

We pay our respects to the Elders past, present, and emerging, and recognize their enduring connection to the land that sustains us all. As we engage in our activities, conversations, and shared experiences, let us remember the history, culture, and wisdom that shape the unique identity of each Indigenous nation.

May we actively strive for reconciliation, understanding, and unity as we continue to learn from the Indigenous peoples and work towards a future of mutual respect, cooperation, and partnership.