On Saturday 26th September 2026 a team of relatives, friends, supporters and those with Rubinstein-Taybi Syndrome will be taking on a range of challenging events at the Chiltern Ultra Challenge from 10km to 50km!

Expect historic trails, rolling hills, nature reserves, and fantastic views throughout from the basecamp in Henley-on-Thames.

The RTS Support Group is a registered charity funded almost entirely by fundraising and voluntary donations.

We exist to provide support to families and carers of people affected by RTS, raise awareness of RTS amongst the medical community, and encourage and support research into the cause and effects of RTS.

The charity supports individuals and families, produces and distributes information on research, medical and policy developments and arranges social family get-togethers to create a supportive network for RTS families.

Our main initiatives over the next two years include:

• Production of a friendly version of the RTS clinical guidelines. These will help inform discussions with professionals and clinicians, giving them credible and high-quality information about key topics related to RTS.

• Updating and expanding the RTS information booklet as it was created back in 2012 and requires a revamp

• Improving our Charity’s website making it more user friendly and targeting families who have recently been given a new diagnosis.

• Ongoing prioritization of the charity’s ethos to provide support and build networks amongst the RTS UK community. This includes hosting our biannual family conferences which are well attended and popular in demand as we invite guest speakers from the medical and educational field to support families to navigate the challenges they face when caring for an RTS individual.

Your donations are greatly appreciated no matter how little you may have to spare. It really does go a long way.