We know how important it is for families and carers to have information that is easy to understand and reflects real-life experiences of living with RTS, especially for families who have recently received a diagnosis.

The Family Guide brings this together in one place. It includes an overview of RTS and its genetics, practical checklists for different stages of development, and real stories from individuals, siblings and families.

It’s designed to help you feel informed, supported and better equipped for day-to-day life with RTS.

(Click the image to download the guide)

International clinical guidelines for Rubinstein-Taybi Syndrome (RTS) have been developed by a global panel of experts, based on a review of over 800 publications. They bring together the best available evidence into a single, consistent resource to support understanding, diagnosis and care.

The guidelines cover key topics including sleep, feeding, dermatology, anaesthesia and behaviour, with practical summaries to support discussions with healthcare professionals.

Patient group representatives, including RTS Support Group members, contributed to ensure real-world experience is reflected.

As the guidelines include technical language, written primarily for clinicians, a more accessible, plain English version has been created for as a useful easy to digest resource for families and to refer to in meetings with clinicians and experts.

(Click the image to download the guide)

The original published material the ‘First International Consensus Statement’ may also be useful to share with healthcare professionals. It can be found here: Diagnosis and management in Rubinstein-Taybi syndrome: first international consensus statement – PubMed