28th February 2018

Working to bring greater awareness
to diseases of exceptional rareness

At Solaris Health, we often work with clients in the rare diseases category, developing communications and educational content across a broad range of print, digital and event formats.

Rare diseases are considered to receive less attention and budget than the more prevalent therapy areas1, but this provides us with unique opportunities to really focus our efforts where they can make the biggest impact. Due to their rarity, new developments in the understanding and treatment of these diseases can be more frequent and complex, so this information needs to be communicated concisely with a deep understanding of what these changes mean for everyone involved.

With fewer patients compared to more common diseases, working on rare diseases also offers opportunities to interact with patients, providing us with insight into their disease and how it affects their life. Their strength and the strength of their families is truly inspiring, and knowing our work is making a difference to their lives, no matter how great or small, is the most rewarding part of what we do.

Information about rare diseases can often be perceived as dry, so it is important to create interest with engaging message delivery, such as with interactive digital elements that aid understanding, creative content that instil emotional investment and passion, and dynamic presentation of the information most relevant to the audience. It’s also essential to structure information in a way that is clear and easy to follow for audiences, to best aid understanding in what is sometimes limited time – especially for busy healthcare professionals (HCPs).

A key part of our work is raising awareness of rare diseases amongst HCPs. Such campaigns encourage them to consider less common conditions as possibilities in their diagnostic pathways. This can help prevent long delays in the diagnosis of rare diseases, and gives patients a name for, and greater understanding of, their condition. Treatment can then begin, and they can start a path toward a better life. With the recent announcement that Shire has teamed-up with Microsoft and EURORDIS-Rare Diseases Europe to tackle rare disease diagnostic challenges, we look forward to seeing improvements in the speed and accuracy of diagnosis, which are essential for timely intervention.

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Despite their rarity, rare diseases as a whole are anything but rare (1 in 17 people, which is 30 million people in Europe alone2). There is a vast and varied array of rare diseases, and considering how connected our personal and professional lives are, you’re very likely to know at least one person who is living with a rare disease. Today is your chance to show them how much you care, and understand the challenges they face.

We look forward to continuing our work in enabling HCPs to better understand, diagnose and treat rare diseases, thereby giving patients new hope for the future that comes with greater understanding of their condition and treatment opportunities.

1. https://www.raredisease.org.uk/media/1638/rduk-research-funding-report.pdf
2. https://www.raredisease.org.uk/what-is-a-rare-disease/