NHS Alström Syndrome Multi-Disciplinary Clinics
In Partnership with the NHS, ASUK are now able to offer specialist medical clinics for people who are affected by Alström Syndrome. Please contact us if you would like to attend. To receive further information or to attend the Children’s clinic please contact: Kerry Leeson-Beevers on 01709 210151 or email firstname.lastname@example.org.
For the adult clinics please contact Elizabeth Loughery on 07517 278 946 or email email@example.com.
We hope that families will be helped by attending one or two clinics per year. Extra Hospital visits can be arranged for specific problems or tests. The clinics include:
- A carousel of tests and assessments – each person has their own timetable with appointments and tests ranging from cardiology, respiratory tests, diabetes and metabolism and pre-arranged appointments for audiology, psychology, urology and other tests which are deemed necessary
- A summary of results and recommended therapy would be sent to each family, and their hospital and community carers.
- A carefully planned set of tests and one blood sample taken at least once per year (providing patient and family are not too upset or young).
- ASUK will be available throughout the clinics to offer support and information
Accommodation costs will be provided for by the NHS Trusts involved and ASUK can book this accommodation for you.
Click here for a QE Hospital leaflet that provides further information about the adult clinic and contact details for their clinical team.