We are an influencing and policy shaping organisation.
Societi has four aims:
1. Awareness raising - a voice for Kawasaki Disease
2. Clinical research - influencing funders and policy
3. Clinical supervision - shaping new care protocols
4. Supporting KSSG - the UK Support Group
We don’t provide support directly to families – because our partner, KSSG, does that.
By working in partnership, we can achieve the stated aims of Societi and those shared aims of our partners and stakeholders. In partnership we can have greater impact, work with increased pace and reach and create the urgently needed step change for Kawasaki Disease - in awareness, timely diagnosis and treatment.
We have developed our strategy as the starting point from which to engage with our partners and discuss mutual opportunities to address the challenges we collectively face.
Our partners, stakeholders and organisations we are in dialogue with include:
- The UK Kawasaki Disease Support Group - KSSG
- NHS England
- Bristol Children's Hospital
- British Heart Foundation
- World Heart Federation
- Great Ormond Street Hospital
- O Street Design
- Imperial College London (St Mary's Children's Hospital)
- Public Health England
As a very young organisation we are actively looking for partners who can help us achieve our ambitious strategy ......What can you bring?
The UK Kawasaki Disease Foundation
A National UK Strategy for Kawasaki Disease
Across the UK, many hundreds of children are affected by Kawasaki Disease every day. Some are growing up with acquired heart disease, likely to be an ever-present challenge which they will have to face. Others will be receiving a diagnosis today. Perhaps a timely diagnosis. Perhaps not.
Unlike many medical conditions of significance, no UK strategy has been in place for improving the outcome of Kawasaki Disease. At Societi, we saw this as an opportunity to collaboratively develop a UK Strategy. Our Strategy has set out the issues, focused on the key outcomes sought, assigned responsibilities for investment and action, next steps and identified the resources required to get us to where we need to be.
We must act - now - to address Kawasaki Disease, the leading cause of acquired heart disease in children in the UK. Having undertaken a review of the current environment around Kawasaki Disease, a UK Strategy has been developed by Societi; recognising the four parallel areas which must be progressed as part of an integrated, proactive response to the immediate needs identified. Recognising the cumulative inaction over time, the increasing incidence being evidenced by recent research and the significant long term threats which can be posed by Kawasaki Disease, we must now implement our strategy as a priority, with pace and through strong partnerships.
Our Strategy is driven by the four strategic aims of Societi:
- National awareness raising
- Clinical supervision
- Support for the UK Support Group
Delivering the Strategy - Priority, Pace, Partnership
Driving forward implementation of our strategy across all four of the strategic aims for Societi means we must work to enable Kawasaki Disease to be identified as a priority by funders and policy makers. Individual components of the strategy are critical, but dynamic implementation of our comprehensive, integrated approach is now urgently needed.
Every year, hundreds of children are treated for Kawasaki Disease. Of these, 28% develop heart complications whilst others face different, serious complications. Not enough is known about the long term effects of Kawasaki Disease but what is known is that it is the leading cause of acquired coronary artery disease in children in the UK. What is also not know is the level of misdiagnosis and the number of children who go untreated and who are silently affected by Kawasaki Disease. We have the knowledge to dramatically reduce acquired heart disease in children. We must now resource putting that knowledge in place and proactively prevent catastrophic, avoidable heart damage for an ever growing population of children and young people.
Download the Societi UK Strategy for Kawasaki Disease by clicking the link on our Resources page.
Kawasaki Disease is the leading cause of acquired heart disease in children in the UK.
...it's time we changed that.
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Our Approach? - Working together with Partners and Stakeholders
Our Approach? - Building and Growing Partnerships around Kawasaki Disease
Our Approach? - Developing a UK Strategy for Kawasaki Disease
At Societi we want to work in partnership with other organisations, charities, the media, Government Departments, the NHS and research Universities to build a strong network of understanding and knowledge around Kawasaki Disease.
We recognise that only by working together can we transform the levels of understanding and knowledge about Kawasaki Disease, and through increased knowledge ensure timely, correct diagnosis and treatment for children across the UK.
Through strong partnerships, we can lever investment, enable research, create and implement new care standards and critically, we can help change the prospects for children affected by Kawasaki Disease from possible lifelong care - to a prompt, full recovery.
Work with us? If you'd like to become a partner, working together with us to tackle Kawasaki Disease, please contact us by clicking here.