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The Student Voice Prize will return on the 6th October 2021!

The Student Voice Prize is an annual, international essay competition 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.

Each year, we give patient group advocates the opportunity to talk about their experiences with their rare condition through the Patient Group Pairing Scheme.The scheme benefits patient groups because it allows groups to share their story and experiences with a doctor, nurse or scientist of tomorrow who may never have considered working in the rare disease space before.

The scheme benefits students because it introduces them to rare disease early on in their career and helps them to understand the patient experience. They will learn a first-hand account of what it’s like to live with a rare disease in the hopes that they walk away with a new perspective on rare disease care, policy, research and treatment.

If you needed any more convincing on why you should take part, then here’s three reasons for why you should get involved! (They do say that the best things come in threes, hey?)

  1. Have your voice heard by medical professionals early in their career
  2. Build connections with medical students and practitioners early on
  3. Raise awareness of your rare condition

It has been proven that there is a lack of understanding and experience of rare disease amongst healthcare professionals. It is why educating health professionals 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 that it is more difficult to address the needs of a rare disease patient in a typical office visit. In 2021, the new UK Rare Disease Framework placed increasing awareness of rare diseases amongst healthcare professionals as priority number two. The report recognised that GPs, as the gatekeepers to health services, will not routinely have the knowledge or experience to correctly identify when a patient is suffering with a rare condition. This leads to long diagnostic delays and significant distress for rare patients. This lack of education and understanding continues to be highly detrimental to the rare community, especially when nearly 19% of those leaving medical school are choosing to be GPs (2018.)

Sadly, rare disease experience and expertise are not shared between medical practitioners. This makes coordination of care difficult later down the line. The 2013 Shire Report found that 62% of physicians stated that there aren’t enough opportunities to network with other physicians who treat rare diseases. This is a real issue since rare diseases often affect multiple body systems and present an array of symptoms that cannot be pinned to one clinical specialty.

Students volunteering through the Student Voice Prize to be educated this early on in their medical career can only be a positive thing for the rare community. The Patient Group Pairing Scheme allows students to consider the possibility of rare and build this recognition into their professional practice as early as possible. Having a conversation with rare patients can have a real impact on anyone, let alone students who have chosen to become doctors to treat and help people. Patient groups should not underestimate the impact this scheme can have and the powerful lessons that can be learnt from it. All you need to do is read last year’s winning essays to see how much was learnt by students during the pairing scheme.

 

The Student Voice Prize seeks to encourage the next generation of medical professionals and researchers to consider rare 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 those living with them. By entering the competition or even just reading the essays of past winners, medical students are invited to ‘dare to think rare’ and encourage their peers to do the same. It is 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, alongside our partner M4RD, seek to build this network of enthusiastic and interested medical professionals. The Patient Group Pairing Scheme invites patient groups and advocates to be part of this network. It is only beneficial to patient groups to have medical students interested and aware of their rare condition. The Patient Group Pairing Scheme provides the opportunity to build connections that can lead to fruitful collaborations in the future.

If you needed any more convincing, then surely the proof is in the pudding, right? Check out what Jess Hobart, Co-chair of the UK Mastocytosis Support Group had to say about her pairing with last year’s winner Catriona:

 “We were so grateful to have the opportunity to be paired with a student with an interest in learning about the experience of living with a rare disease.  We were paired with Catriona Chaplin, who turned out to be a great interviewer and empathetic listener, and that made it a great experience for the patients she spoke with.  That she was also a terrific writer means our patients’ voices get a wider audience as well, now that Catriona’s essay has been published in Orphanet Journal of Rare Diseases.  We have only positive things to say about our experience with the Student Voice Prize.”

 

How do I apply to be paired?

It’s simple to take part in the Patient Group Pairing Scheme! All you need to do is:

  1. Read the pairing terms of reference
  2. Fill out your application
  3. Wait for the SVP team to get in touch with more information about potential pairings!

Told you the best things come in threes didn’t I!

Three reasons to join the Patient Group Pairing Scheme for The 2021 Student Voice Prize!

by Philippa Norman time to read: 6 min
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