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We are passionate about our work in rare diseases
At emotive, we understand that largely dissimilar rare diseases face very similar challenges, including navigating the world of healthcare. In the UK alone, around 3.5 million people are living with a rare disease – making rare diseases collectively common.
The importance of Rare Disease Day
Rare Disease Day was established in 2008 because the available treatment for many rare diseases is insufficient, as are the social networks to support patients and their families. Although numerous days already existed dedicated to the sufferers of individual diseases, there had previously been no day representing the sufferers of rare diseases.
Rare Disease Day is a globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare and access to diagnosis and therapies for people living with a rare disease. Since its formation, Rare Disease Day has played a crucial role in building a diverse, international rare disease community that is united in purpose. #Shareyourcolours is an initiative created to help bring awareness to and shine a light on a colourful community of incredible people living with a rare disease. Its aim is to shine a beacon of light or all of those who are yet to find their sense of community and to paint a colourful picture of a bright future for those living with a rare disease.
To learn more about Rare Disease Day, visit www.rarediseaseday.org
What are we doing?
As a company, our vision is to create inspiring programmes that change lives by helping people who are unwell get treatments that make them better. We recognise that rare diseases often come with unique complexities and challenges; therefore, the development of communications to a diverse range of stakeholders must be well considered and specifically tailored.
With 70% of our work focused on rare diseases, we have gained a wealth of experience supporting clients across a range of diseases and indications at all stages of the product lifecycle.
During the COVID-19 pandemic, we have been unable to undertake some of the fund- and awareness-raising activities that we have previously engaged in, such as bake-offs and a screening of films from the Rare Film Festival. However, one thing we have committed to continuously over the last 3 years is our partnership with Medics4RareDiseases (M4RD) and our presence at their Annual Symposium “The Unusual Suspects: Rare Diseases in Everyday Medicine.”
Earlier this month, various members of our team attended this unique online meeting. The agenda offered insights from patients, advocates and doctors to hear a range of perspectives on the rare disease speciality. The M4RD Annual Symposium welcomes medical professionals, trainees and medical students to come together and explore how to improve rare disease management in the UK. emotive has been working with M4RD since 2018, providing support on several projects. One of our Graduate Medical Writers, Ledicia Botas-Perez, attended the event and followed up with a comprehensive report on the meeting’s contents. If you would like to read more about the meeting, including a variety of talks and panel discussions, a full published report will be available on all our social channels in due course.
We are incredibly proud of our pro-bono work with M4RD, a UK registered charity driving a change in attitude among medical students and doctors in training. Our continued creative work with M4RD solidifies our expertise in, commitment to and passion for rare diseases.
Dr Lucy McKay, the M4RD Chief Executive Officer, said:
emotive have been generously providing Medics4RareDiseases with their skills and experience for over 2 years now. Without them, the charity would not be making the progress it is today...”
“…They have taken the time to truly understand the problem that M4RD is trying to address and given us the tools to be able to go out there and make real change. Their dedication to improving the lives of those with rare diseases is evident in their work with us. They understand that there needs to be progress in all areas – from fundamental education and awareness all the way through to exciting innovation and therapies – and that one without the other is simply not enough. I cannot thank the team at emotive enough for what they've enabled us to achieve.”
Rare diseases are important to us at emotive 365 days a year; however, on this Rare Disease Day, we encourage you all to #shareyourcolours and join us in helping create a better outlook for patients with rare diseases.
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