We have been sent a survey which is essentially for professionals who provide care for those affected by KS/XXY. We realise that many of you may work in this type of role in addition to being an XXY person – or someone who has some relationship to an XXY person and we hope that you may be interested in helping with this s short survey. We would be so glad if you can contribute, as the voices of people who care for those with KS/XXY (and other conditions classed as Variations of Sex Characteristics or Intersex) often get left out of the picture.
The survey aims to improve healthcare for people who have variations that are usually known as DSDs in medical settings. The study is funded by a Marie Skłodowska-Curie European Commission grant (INIA programme, agreement No. 859869) and it has passed ethics approval at the University of Zurich, which leads this project.
It covers issues such as the provision of psychosocial support, access to peer support, and barriers to healthcare. The results will be used for academic papers, briefs for policy makers, workshops and other outputs that aim to improve care for this group of people.
The survey will run until 30 October 2022. We thank you again in advance for your participation.
