Our Work

We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories:  reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.

 

All / England / EU / Parliamentary / Policy / Research / Scotland / UK / Wales

Regulation of in vitro diagnostic (IVD) medical devices is essential. We are concerned however, that…

The Human Tissue Authority (HTA) regulates the removal, storage and use of human organs and tissue. …

The department of health has been consulting on the draft national framework for children and young …

The Welsh health specialised services committee (WHSSC) has been consulting on its draft service spe…

The Accelerated Access Review (AAR) is being undertaken by the Department for Life Sciences, with th…

On Wednesday 23 March 2016, we launched our new Patient Charter 'Patient perspectives and priorities…

Babies and children with adrenal insufficiency (in most cases they have the genetic condition congen…

Join our alliance of 180+ patient charities

Join us