About Us

The Sydenham’s Chorea Association is a collaboration between health care professionals, families of children suffering from the condition, and adults who had the condition as children.

In around 2010 an unusual number of children with Sydenham’s chorea (Sc) were diagnosed by the West of
Scotland Paediatric Neurology Service based at the Royal Hospital for Sick Children, at Yorkhill in Glasgow. Some were referred to the Neuropsychiatry
Clinic, and the clinic team developed a group for children
and parents. Families, meeting at the hospital, realised the value of mutual support. Clinical staff
recognised the importance of developing better understanding of Sc through research drawing on
the shared experience of families. Their collaboration contributed to the development of the
Sydenham’s Chorea Association (SCA), which in turn has supported further research.

We at the Association aim to provide information about the condition to patients, their families and others, to help them understand the condition and how to manage it. As a rare condition (at least in the countries of Europe and North America), many people, including health care professionals, may never have come across it before.  This can lead to difficulties and delays in getting the right diagnosis, and the appropriate support.

Through their own experiences, our professionals, families and children are keen to help others understand how the condition presents, how it is treated, and how to get the support you need.

We run a private FaceBook page with international reach.

The Sydenham’s Chorea Association also raises money to fund research into the condition. We have supported a major surveillance study of Sydenham’s chorea in the UK, which is progressing well. We are now developing an international panel of experts worldwide to obtain a shared understanding of the assessment and treatment of this condition.

Have a look at our News & Events pages to see what’s going on in your area.

Meet the Board

Chairman – Adrian Sie
Honorary President – Dr Michael Morton
Treasurer – Samantha Samuel