Welcoming members with Weaver Syndrome and Tatton Brown Rahman Syndrome
The Child Growth Foundation is pleased to announce that it will now be offering advice and support for families and individuals with Weaver Syndrome and Tatton Brown Rahman Syndrome (TBRS). We already have a well-established and thriving group for families affected by Sotos Syndrome and there are many similarities between the two conditions. They both typically result in advanced growth during childhood, developmental delay and some degree of learning disability, but genetic testing can be used to confirm a clinical diagnosis in most cases.
Weaver Syndrome iand TBRS are very rare and, consequently, the number of children with affected in the UK is undoubtedly very small with many families feeling very isolated. It is our intention to offer support predominantly within the Sotos group in the first instance but to start a separate group for TBRS & Weaver Syndrome as soon as we have sufficient members. We are hoping to offer a separate programme for TBRS & Weaver Syndrome at the next annual convention with talks from medical experts and informal networking sessions.
The Foundation has already agreed to fund a clinical research programme to develop management guidelines and patient/family literature with Dr Kate Tatton-Brown from St George’s Hospital in London and the Institute of Cancer Research. Kate is acknowledged as being an expert in the field of overgrowth, running a specialist overgrowth clinic at St George’s Hospital and having been involved with the Childhood Overgrowth (COG) study since its inception: the COG study is an international study which has been running for over a decade and aims to identify novel genetic causes of childhood overgrowth and clarify associated clinical features.
We look forward to welcoming new members with TBRS & Weaver Syndrome and would also be very pleased to hear from the families of children with other rare, overgrowth syndromes. The CGF has an increasing number of adult members who are affected by a growth condition.