Orphan diseases: leading the way

‘Orphan diseases are leading the way’: The title of the final slide of the presentation I will be giving at the World Orphan Drug Congress Europe (WODC) in Brussels tomorrow. Events, such as WODC, are a great opportunity to go out and chat, debate and work face-to-face with the community who live and breathe orphan diseases. The title of my presentation is ‘Setting new standards for collaboration in healthcare: An industry perspective’ and I am going to be presenting some simple frameworks in two key areas.

Firstly, I will focus on improving the practice of medical education and secondly, the critical importance of increasing public engagement and awareness of the collaborative work done by all who work in the healthcare field. Both of these topics are crucial in orphan diseases, the unique nature of the community means there must be a deep understanding of individuals in order to provide high-quality education. If this does not happen, education will not be effective, will not help improve patient outcomes and will be a poor use of resources. In addition, given there may be somewhat limited awareness by the public about orphan diseases it is important that successful collaboration and the fascinating personal stories are highlighted – this will help ensure sufficient importance, resource and attention are given to the people who dedicated their lives to improving the lives of others.

Orphan diseases

My focus on these two things reflects my professional and personal drives. Being the Medical Education Lead at Aurora means I focus a lot of my professional time working on how we can refine, and improve the way we provide education, which is both factual and stimulating. For us, this focuses on a psychology-led approach to gain deeper insights into the people we are providing education for. We combine this with adult learning theory to provide educational content in the most effective format possible to achieve improved patient outcomes.

On a personal level, I have worked and continue to work on increasing public engagement in all aspects of science. Much of this is as a Science, Technology, Engineering and Mathematics (STEM) Ambassador, through which I help schools encourage students to pursue STEM subjects.

It is my firm belief that engaging the public to care about health, and the healthcare industry more broadly is the personal responsibility of everyone who works in the industry. The public need to understand where innovations come from and how they are used to help people – we need to talk, and more importantly, listen to the public and engage them in our world. Nowhere is this truer and more important than orphan diseases.

The more we can push to improve our working relationship and our engagement with the public, the more we can be #ProudOfPharma. In this respect, with its genuine approach to listening and working transparently together, the orphan diseases community is very much leading the way.

If you happen to be at WODC, please do come along to my presentation or come and see us at our stand near the Patient Alliance Zone. Alternatively, if you want to chat through our approach to medical education, or discuss how we might increase our engagement of the public, please get in touch.

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