The UK Long Covid ecosystem
Across the UK, multiple organisations exist supporting people living with and impacted by Long Covid.
This multi-organisational ecosystem is one of our strengths. Different organisations bring different expertise, lived experience perspectives and networks, allowing us collectively to support a wider range of people and influence change in different ways.
The response to Long Covid emerged organically across multiple groups and individuals, rather than through a single coordinated structure. Many people affected by Long Covid engage with more than one organisation or community, reflecting the different types of support, information and advocacy available. Peer support groups, grassroots communities, lived experience advocates, individual campaigners, charities and other organisations all play an important role within this wider ecosystem.
The Long Covid Collaboration Group
Five organisations (Long Covid Kids, Long Covid Physio, Long Covid Scotland, Long Covid SOS and Long Covid UK) work together through the ‘Long Covid Collaboration Group’. This group meets regularly to discuss shared priorities, share learning from across the UK’s.different health systems, policy contexts and communities.
This Collaboration Group does not seek to be the sole or representative voice for the wider Long Covid Community. Each organisation remains independent, with their own governance, remit, priorities and areas of expertise. We collaborate where our goals align because working together helps strengthen our collective voice and our ability to influence positive change.
Find out more about each organisation below and the distinct role it plays within the wider Long Covid ecosystem. Together we offer complementary expertise and support for different communities and needs.
-
Long Covid Kids supports children and young people living with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, and their families.
https://www.longcovidkids.org/
Contact: info@longcovidkids.org
-
Long COVID Physio is an international professional network focused on supporting people affected by Long COVID through education, research, advocacy, and peer support. Its goal is to improve access to safe, patient-centred health care.
Contact: info.long.covid.physio@gmail.com
-
Long Covid Scotland is a patient-led Scottish charity advocating for people living with Long Covid. We bring together lived experience and evidence to raise awareness, influence Government and NHS policy, scrutinise services and campaign for equitable, accessible and properly funded care across Scotland. We work with patients, healthcare professionals, researchers, charities and policymakers to ensure people with Long Covid have a meaningful voice in decisions affecting their health and support.
Contact: longcovidscot@gmail.com
-
Long Covid SOS is a patient-led charity, run by volunteers with lived experience of Long Covid, ensuring the voices of people living with the disease are heard. Our work includes sharing trusted information, challenging misinformation, supporting medical training, contributing to research, and campaigning for the recognition, research, rights, care and understanding that people with Long Covid deserve.
Contact: info@longcovidSOS.org