To mark Rare Disease Day 2017 our collaborators at Orphanet Journal of Rare Diseases published our three winning entries to our student essay competition, ‘The Student Voice’. We also presented all three of our winners with their certificates at our scientific conference on Tuesday.
Srinivasa Rambhatla, a student from the University of Birmingham, wrote the winning answer to our policy question – “How can clinicians and researchers, including students, help to deliver the UK Strategy for Rare Diseases?”. His essay, entitled “Implementing the UK Strategy for Rare Diseases more effectively: A patient perspective” used the experiences of an Alström Syndrome patient to highlight the relevance of the strategy to patients, and the ways that clinicians can implement it their benefit. You can read Srininvasa’s essay in this BMC ‘On Medicine’ blog.
Ferenc Gutai, from Dundee University, wrote the winning answer to our research question – “How can rare diseases lead the way in medical research and clinical innovation?”. His essay, entitled “The rare disease revolution: how it will help shape the future of medicine” gave a fantastic overview of the many different ways that rare disease research is at the cutting edge of science, whether at the forefront of next-generation sequencing diagnostics, promoting clinical innovation, or spearheading patient engagement. Ferenc’s essay is also available to read in the BMC’s ‘On Medicine’ blog.
Rebecca Nunn wrote the winning answer to our patient experience question – “The impact of a rare disease is much more widespread than its direct symptoms. Discuss how, with particular reference to the patient experience” – and was declared the competition’s overall winner. Her essay, entitled ““It’s not all in my head!” – The complex relationship between rare diseases and mental health problems” really impressed the judges with its excellent use of personal experience and independent evidence, all to highlight an often overlooked area of rare diseases – their impact on mental health. As our overall winner, Rebecca’s essay was published as an open access article in the Orphanet Journal of Rare Diseases, you can view it here, and download it to share with your friends and colleagues.
It was a pleasure to meet all of our winners at our conference. Congratulations on your success and we hope you recieve great feedback on your published pieces.
With thanks to our sponsors: Costello Medical Consulting, TranScrip and Linguamatics.