We’re a young organisation, and one which is growing fast. And we’re busy! There is SO MUCH to be done! We know Kawasaki Disease is serious – awareness is URGENT…. Join us – support us – help us? At Societi we’re driven by our four strategic aims of Awareness raising, Clinical research, Clinical supervision and Support for KSSG.
We’ve set out here some of our main areas of work and we noted too just some of the partners with whom we are working – or who are supporting us, organised to show how these contribute to our strategic aims. For more information on or if you’d like to contribute to any of our projects, please contact us! Our priority areas are noted below.
This remains a top priority and we will not shift our focus from this. There’s lots to be done! Please help if you can – you can download your own materials here. Get in touch if you’re planning a major event and we will provide information for you!
We must identify sources of funding if we are to continue with momentum. We are working on this and we are hugely grateful to an ever growing team of Societi Supporters who work hard to raise much needed funds. Please help if you can – find out more about fundraising including a host of fundraising ideas and resources on other pages of this website. Click the Fundraising tab above to get going!
E-Learning for Clinicians
We are working in partnership with the Royal College of General Practitioners and will complete our E-Learning module on Kawasaki Disease in 2019. As soon as this is completed, it will be available to over 100,000 health care professionals including up to 60,000 GP’s. We aim to work with other professional bodies like the Royal College of Paediatrics and Child Health to make sure that as many doctors as possible get to know Kawasaki Disease.
Building knowledge – clinicians
A key area of our work is in supporting the growth of knowledge by doctors, nurses, healthcare professionals and other carers. We do this in a number of ways – including the development of our GP (Primary Care) information packs, which are distributed to hundreds of GP surgeries each month, comprehensive Hospital information packs – which have already been sent to ALL major children’s hospitals in the UK, and we are progressively ending out more each month. We also enable the publication of articles in key journals – a recent example includes an Editorial in the BMJ Journal Archives of Diseases in Childhood – this is the most widely read paediatric publication. We focused here on increasing incidence and the need for doctors to EXPECT to see Kawasaki Disease and be ready to treat it. We maintain an active communication plan and develop films, podcasts, undertake webinars, promote our awareness animation – and more besides. If you’d like to know more about our work, please get in touch.
Our Family Resource Portal
We launched this in January 2017 and continually add to the information available within the Portal. In September 2018 we were delighted that it won a patient information award from the British Medical Association – and we’re committed to maintaining the high standard of information on this resource, making sure it is relevant for parents and families facing Kawasaki Disease. Please click in the top right of your screen to go to the Portal if you’ve not seen it already!
UK Clinical Guidelines – Kawasaki Disease
Working with NHS England Clinical Directors and national experts from UK hospitals – all leading clinicians in their fields, we have developed a new UK guideline on long term cardiac management for Kawasaki Disease. These will be published during 2019 and we will continue to work to promote and publicise the guidance, so that children, young adults and adults with cardiac damage following Kawasaki Disease can received the long term care they need.
National Clinical Trial
This is a very significant grant by Conect4Children funding for our clinical trial and here is what they said on announcing the programme back in April 2019: “Conect4Children has launched its first portfolio of pan-European paediatric studies. Building a clinical trial infrastructure for the development of innovative and safer medicines for children in Europe. Read their press release here: https://bit.ly/2IMZiVB ”
The trial will be investigating the potential for better acute treatments for Kawasaki Disease. This team of expert clinicians is led by Dr Despina Eleftheriou and Prof Paul Brogan (both Scientific Advisory Board members for Societi).
Societi is a partner in the trial team and we’ll be involved throughout. Work is underway across Europe – led by our team here in the UK.
National Steering Group for Kawasaki Disease
Societi Chairs and leads the work of the National Steering Group for Kawasaki Disease – which works to raise the strategic profile of Kawasaki Disease, engage with clinical leaders and helps to guide priorities for action, taken forward by Societi and our partners. We will continue to lead the Steering Group and allow our UK-wide co-ordinated Kawasaki conversation to grow.
Progress through Partnership
All of our work is undertaken in partnership – we cannot achieve all this alone. In addition to a growing number of Societi Supporters who power our work with their phenomenal fundraising, we work with professional bodies, companies, stakeholders, agencies and many other partners. Every single one is key and contributes directly to our success. A few of our partners are shown below.