TS Awareness

Aim: To raise awareness of Turner's syndrome and support women and girls with TS in achieving their full potential.

Being diagnosed with Turner’s Syndrome can be a terrifying experience. Our support groups aim to be a place of comfort and discussion away from the doctor’s waiting room where TS girls and their families can learn to come to terms with the condition, the health checks required and the social aspects of what lies ahead. Being available at the earliest possible stage is priority because we aim to support TS girls in living the best life possible.

Our support groups are generally driven by those who attend them. We can have information and professional medical advice available but they have also become a social hub where individuals and families who are caring for someone with a genetic disorder can meet in a comfortable environment.

COVID19 has meant that we have unfortunately not had the means nor the opportunity to carry out in person support groups for those with Turner’s Syndrome and others affected. Being able to get more of these group up and running will be an achievement in itself and allow us to continue our mission to help TS women and girls achieve their full potential.

Turner's Support Society and Down's Syndrome Association provide some support groups but these can be large and intimidating for some. They also don't account for the huge variety of genetic disorders there are. Our support groups also consider family members and loved ones that may feel they aren't able to get support. Whilst there is plentiful support for parents, other family members and loved ones are taken into consideration such as brother's, sisters etc.

Ragdolls would like to open the doors to all who feel they could use somewhere to go and discuss or find out more.

Most of our volunteers and team are also TS women who offer a wealth of knowledge on their own experiences which newly diagnosed and those seeking further information can benefit from.

We have a survey which is available for all members, medical professionals and general public to make their views heard by us on where our efforts are best placed. Of 130 people asked from January 2022 to May 2002  “Where should Ragdolls UK focus our efforts?” a staggering 80% suggested that we make support groups available.

This survey is circulated via our website, blogs, email lists and social media. We also hold a WhatsApp group where this discussion has taken place. We firmly believe in our members and the TS girls we support having a say in what support is available to them.

We are open to all ages. Our main service users are young women with Turner's Syndrome and their families who need extra support and advice.

Funding method

Keep what you raise – this project will receive all pledges made by 13th August 2025 at 11:56am