It’s coming to be that time of year again when Rare Disease Day is just around the corner!
In 2023, Rare Disease Day will be highlighting how well-coordinated care can make a real difference in people’s quality of life. Effective coordination minimises the impact of multiple appointments on their busy lives and helps healthcare professionals to work together effectively to provide high-quality and joined-up care.
Many rare conditions are lifelong and complex. As a result, people affected by rare conditions often need support and expertise from a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language therapists, and learning disability nurses. This can mean having multiple appointments across different settings and on different dates. (Get involved in Rare Disease Day 2023!)
We are getting involved with this year’s theme by running our second annual rare disease day event with Medics4RareDiseases (M4RD) – ‘Beyond the Student Voice Prize: Exploring advocacy and opportunities in rare diseases.’ An opportunity for students, patient groups and industry representatives to connect with each other.
The Student Voice Prize is an annual, international essay competition that raises 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.
Even though the competition is closed for entries for 2022 there is still work to be done!
Why attend Beyond the Student Voice Prize
This year ‘Beyond the Student Voice Prize’ will showcase the work of a range of people within the rare disease community through a series of short inspiring presentations designed to show the true breadth of involvement and advocacy in rare disease.
There will be a series of short inspiring presentations from a cross-section of individuals as well as guidance for getting more involved with the rare disease community and building a focus on rare into your career as a medical professional.
The event aims to bring people together, build connections and showcase the exciting opportunities that a career focused on rare disease can bring. Attendees will hear from M4RD ambassadors, pediatricians, psychotherapists, specialists, policy makers and advocates.
In order to have better care coordination in the future, we need to start now with raising awareness of the brilliant opportunities that exist for a career in rare diseases. We need to have more people who are actively passionate about rare diseases who understand the challenges of them and are able to share them with their peers. We know the Student Voice Prize is playing a key role in cementing this understanding but we always want to take it a step further.
Rare diseases are gaining traction as a pressing health priority worldwide. We have now seen the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework!
There has never been a better time to get involved with the rare disease community to help create change, raise awareness and drive your own personal development, whilst ensuring a better future for those living with rare diseases and the care they receive.
Feedback from The 2022 Student Voice Prize
“Hearing someone living with a rare disease tell their story is incredibly touching. It makes you as a future health professional determined to do better and be better.”
“Having an open mind and being paired with a patient has taught me lessons I’ll keep with me throughout my career.”
“Speaking to people living with rare disease often feels like looking through a specialised lens – one that brings the gaps and flaws in a healthcare system into sharp focus. This perspective is almost always as hard hitting as it is valuable, and one I’d strongly encourage any medic in training to explore whenever they have the opportunity to do so.’
Whether you already have an interest in rare disease in some way, or it is completely new to you, we urge you to take on the challenge of thinking outside the traditional medical curriculum and exploring the experiences of a patient group. They are truly experts not only in their own conditions, but the ways in which healthcare systems are often not ideally suited to supporting patients. We think their insights offer a lot for healthcare professionals to learn about their own practice, and how critically we should examine the systems we practice in.
