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The Student Voice Prize: an international essay competition raising the profile of rare disease

The Student Voice Prize: an international essay competition raising the profile of rare disease

The Student Voice Prize (SVP) will return on the 5th October 2022! The Prize is an annual, international essay competition hosted by Beacon and M4RD that focuses on raising the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training.

How can patient advocates get involved?

Each year we give patient group advocates the opportunity to talk about their experiences through the Patient Group Pairing Scheme. They put in an application and are then paired with a student to have insightful conversations. These can be up to an hour and a half in length and should contribute to the student’s answer to one of the three essay questions.

The scheme benefits patient advocates by allowing them to share their story and experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with a rare disease before. It has been shown time and again to have a large impact on the personal learnings and future clinical practice of the students who enter the competition. It has also led to the development of long-term connections between patient groups and students and has allowed groups to build sustained interest in their rare conditions.

The proof is in the pudding: “It was empowering to feel that our community’s voice had been heard. When you have a rare disease, you often feel unheard as there is so little knowledge out there. Our student has remained in touch and has taken up a position on our scientific advisory board. We have been trying to gain interest with students and HCPs for a long time with very little success.

“Building a relationship with a medical student would not have been possible without the Student Voice Prize. The opportunity offered to a small charity like ours is unique and truly makes a difference in what we understand about Poland Syndrome and how our community is heard and understood.” – Sam Fillingham, CEO at PIP UK, paired in 2021

Why do we need the Student Voice Prize (SVP)?

It has been proven that there is a lack of understanding and experience of rare disease amongst healthcare professionals (HCPs), and HCP education remains a key challenge and priority for the rare disease community. The 2013 Shire Rare Disease Impact Report found that 88% of physicians in the UK reported it is more difficult to address the needs of a rare disease patient in a typical office visit. Meanwhile in 2021, the new UK Rare Disease Framework stated increasing awareness of rare diseases among HCPs as priority number two. Another issue is that experience of rare diseases is not shared between medical practitioners, making coordination of care difficult later down the line. The 2013 Shire Report found that 62% of physicians stated there aren’t enough opportunities to network with other physicians who treat rare diseases. This is a real issue when rare diseases so often affect multiple bodily systems and present an array of symptoms that cannot be pinned down to one clinical specialty. 

The Student Voice Prize seeks to influence the next generation of medical professionals and those who will come across rare diseases to consider them more in their practice. With over 7,000 rare diseases, it’s of course impossible for clinicians to know about all of them. However, it is possible for doctors to appreciate that rare diseases are collectively common and recognise the exceptional challenges faced by patients with rare diseases.

By engaging with SVP, medical students are invited to “dare to think rare” and encourage their peers to do the same. It’s a simple thing, but classmates and peers have immense influence on each other just through conversation and the sharing of stories and experiences. The Student Voice Prize seeks to build this network of enthusiastic and interested medical professionals and the patient group pairing scheme invites patient groups to be part of this.

It is clearly beneficial to patient groups to have medical students interested and aware of their rare condition, and the pairing scheme provides the opportunity to build connections that can lead to fruitful collaborations in the future. 


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