Check out our new publication with Ring 20 Research & Support UK: Assessing the role of ketogenic dietary therapy in ring chromosome 20 syndrome: a patient led approach! A big congratulations to Don and Allison, the charity’s co-founders, for directing this project and presenting our findings at the British Paediatric Neurology Association conference this January. […]
This week we were pleased to attended the latest NIHR INVOLVE conference ‘Co-production: Teasing out the Tensions’. Co-producing healthcare research with patient partners invariably presents challenges and can lead to questions about power sharing, ethics, intellectual property and how co-produced research should be shared across society. This event gathered a range of stakeholders to discuss […]
We are delighted to announce our latest funding application to Addenbrooke’s Charitable Trust has been approved! Led by Lupus UK, this research project will investigate how people with invisible, fluctuating and long-term health conditions can be supported to remain in employment. We anticipate an August 2020 start date, and look forward to further collaboration with our […]
Have you been diagnosed with lipodystrophy? If so, please consider completing our 5-minute, anonymous patient survey (link here)! We’d like to hear from everyone about their experience with fatigue: does this symptom affect your daily quality of life? Significantly, or maybe not at all? Your answers will help us design our new study! Please get […]
