‘Think Research’ Rare Diseases Patient Day
12th October 2016,
Attended by Beatrice Redfern of PCD Support
Purpose of the day: The aim of the day was to provide insight and training in aspects of Rare Diseases research, as well as providing information-gathering and networking opportunities.
Hosted by the joint collaboration between NIHR Rare Diseases Translational Research Collaboration (RD-TRC) and NIHR BioResource – Rare Diseases, the Patient day was a great opportunity to gain insight into rare disease research, including how to promote and interpret research. The day was jam-packed, with several presentations and workshops running to a fairly tight schedule with time for a bit of networking and sandwiches. The day was certainly informative, with a number of topics related to rare disease explored (e.g. ‘Rare Diseases and the Future’ & ‘The Diagnostic Odyssey: What can we do about it?’). The patient group led workshops were a great source of hints and tips which I will share with my fellow colleagues here at PCD Support. The day was also useful in highlighting some of the challenges posed to doctors, researchers and patients when it comes to conducting research. An interesting chat with stakeholders from the NIHR BioResource shed light on the process of anonymising patient data, as well as informing me about the latest offering when it comes to patient centred databases and resources.
Thank you NIHR for an interesting and valuable day.