Societi was established in 2015 as an organisation to raise awareness of Kawasaki Disease – a disease which affects hundreds of children in the UK each year. Societi is an influencing and policy shaping organisation which works through partnerships to drive transformational change in awareness across the UK, about Kawasaki Disease.
Progress in understanding Kawasaki Disease has been severely hampered by poor levels of awareness, a lack of investment and a lack of essential research in the UK. Kawasaki Disease is a medical emergency and we are working to get it recognised!
Children affected by Kawasaki Disease have a much improved chance of a good recovery with timely diagnosis and the correct treatment. By raising awareness of Kawasaki Disease we aim to ensure children receive prompt diagnosis, rapid treatment and appropriate long term care.
Awareness – Our Number 1 Priority
Our ambition is that EVERY parent, EVERY doctor – and EVERYONE knows Kawasaki Disease. You’ll find more information throughout our site on our awareness work. Here’s our awareness animation – a video we designed and made and which we’re proud to say has already reached tens of thousands of people, helping to get Kawasaki Disease known. Please share this animation if you can.
Actively pursuing change
In the UK, children affected by Kawasaki Disease today face the same poor prospects in terms of outcomes as they did 20 years ago. We want to change that.
We are an influencing and policy shaping organisation. We want to see urgently needed research happen and we pursue changing policy and clinical practice for Kawasaki Disease across the UK. Not enough is known about Kawasaki Disease, its symptoms or its treatment. Long term care for affected families is limited. Many agencies, doctors and parents are unaware of the disease. We want to change this.
Perceived once as a rare illness, this is an outdated idea which we are working to change. This misunderstanding hampers UK research into Kawasaki Disease which is stifled by lack of funds. It also hampers clinical resource allocation for treatments and long term clinical support that research shows families need. A lack of awareness of the true incidence of Kawasaki Disease among ‘front line’ clinicians needs to be addressed, in order for Kawasaki Disease to be considered as a possible diagnosis at an early stage.
We want all clinicians dealing with children to‘THINK Kawasaki Disease’ if they see a child with persistent fever plus any two or more symptoms of Kawasaki Disease. We need doctors to EXPECT to see it – and be READY to treat Kawasaki Disease.
We don’t provide advice or emotional support directly to families – because our partner KSSG UK does that.
In Partnership with KSSG
Societi works in partnership with KSSG – the support group for families affected by Kawasaki Disease. They run a telephone helpline, closed Facebook group for affected families and can offer emotional support. Societi Foundation hosts their website pages within this site – please click here to go to the KSSG pages.