Participation 

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World Health Organisation (WHO) Long Covid Panel - defining Long Covid. 

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Ministerial Round Table on Long Covid chaired by Lord Bethel / Matt Hancock / Sajid Javid / Maria Caulfield - representing the experiences of children and young people.

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National Institute for Health and Care Excellence (NICE) Expert Long Covid Panel representing the experiences of children and young people.

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NICE - Contributing to the Long Covid Guidelines. 

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National Institute for Health Research (NIHR) - Long Covid Expert Group. 

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International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC)-  representing the experiences of children and young people.

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NHS Long Covid Task Force - presenting & representing the experiences of children and young people.

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Clinical Commissioning Groups - consultation for the development of the Paediatric Long Covid Hubs.

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Westminster Forum - presenting the experiences of children and young people. (March 2022)

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All-Party Parliamentary Group, UK Parliament (APPG) on Long Covid in Children - providing evidence.

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Families Healthtalk Advisory Panel Oxford University - representing the experiences of children and young people.

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Catherine Peckham Symposium - presenting the experiences of children and young people. (Jan 2022)

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The Children and Young People’s Commissioner for Scotland - children's rights.

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Royal College of Occupational Therapists National Guidance -  development of OT national guidance.

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Centre of Disease Control - referenced as a patient support resource.

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NICE - referenced as a patient support resource.

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National Voices Webinar on Long Covid - networking & collaboration.

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Long Covid Europe - Membership, information sharing and coproduction.

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Labcorp Drug Development Webinar USA - Engaging Patients in Long COVID

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International Consortium Consensus on outcomes for post covid condition in children

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Support

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Peer to Peer Support Services - 6000+ members - information sharing, validation and connection

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Patient Signposting - improving the lived experience

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LCK ChatBox - an online forum for children and young people living with Long Covid. Separate channels for different age groups age 8 - 18 years, parents and caregivers

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LCK Connected - online hangout sessions provide a connection for children and young people living with Long Covid.

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LCK Occupational Therapist Group Support - funded access to professional guidance.

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Creation

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Digital Support Guide - Shining a Light on Long Covid on Long Covid in Children and Young People. A guide to recognition, support and recovery.

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Patient Support Resources - including Cautious Tortoise, Pacing Penguins, Teachers Tips

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Youth Advisory Panel - working with young people at the heart of our work 

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NHS GP 'Think Long Covid' - co-production of GP awareness leaflet

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NHS Your COVID Recovery Website - consultation on the paediatric page 

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Long Covid Kids Website - with a visitor every 45 seconds 

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Long Covid Kids Awareness Video - to raise awareness and change the narrative early in the pandemic

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Long Covid School Pack - for schools, families and healthcare professioan

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Long Covid Europe - school guidance

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Published Articles - research, opinion pieces, and discussion including BMJ, The Lancet, Nature, The Conversation, New Science Magazine, National Geographic, SecEd, Evidence-Based Nursing, British Journal of Child Health

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Campaigning For Prevention

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CoSchools - Supporting schools by delivering tools to help make them healthier

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Schools Freedom of Information Requests - highlighting experiences in England and Scotland.

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International Webinar of Paediatricians - bringing together expert clinicians and patients.

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Technology 101 Prevention Webinar - hosted with industry experts to consider the options available.

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Social Media Campaign - the only way to avoid Long Covid is to avoid Covid.

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Social Media Campaign - CO2 Monitors in schools.

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Campaigning For Awareness

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10 Downing Street  - Our call for recognition, support and recovery. Children and young people delivered letters sharing their experiences with the Prime Minister along with our letter and support guide. 'Shining a Light on Long Covid on Long Covid in Children and Young People. A guide to recognition, support and recovery'.

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Long Covid Kids in the News - participation in documentaries and press interviews. 

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Social Media Campaigns  - consistent messaging across multiple platforms - Recognition / Support / Recovery, including prevention, impact, and improving the understanding by sharing emerging information.

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National & International Representatives - England, Scotland, Ireland, Wales, Isle of Man, USA, Canada, Greece, New Zealand, Austria.

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Research

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Paediatric Covid Research Library - a useful resource for families and clinicians. 

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Paediatric Research - co-production, consultation and participation in independent U.K and international research.

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Connections - connecting participants and researchers for UK & International research. 

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Social Media Campaigns - sharing lived experiences to raise awareness and interest.

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Polls & Surveys - to assist policy creators and service providers.

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