Around 300 million people worldwide are affected by a rare disease. Despite this staggering statistic, rare diseases often do not garner the same level of focus as more common conditions. Aside from researching new treatment options, it is equally important that people affected with rare diseases are given opportunities to connect with their community. These communities, comprised of patients, family members and HCPs, are the driving force behind increased research and support. They provide vital emotional support and the most up-to-date information on research and treatments.
An iterative approach
LHON (Leber’s Hereditary Optic Neuropathy) is a rare disease that leads to central vision loss and predominantly affects young men. While rare, LHON is the most common of the conditions known as inherited mitochondrial diseases. As part of a shared aim to raise awareness of LHON and improve support for those affected by the condition, our team worked with the LHON Society — a UK patient-led charitable organisation — to refresh and rebrand their website.
The LHON Society website has always been an authentic voice for information and support. It was set up, like the Society itself, by those affected by this rare disease — whether personally or as a family member. Taking the original site as a starting point, our initial task was to rebrand the website in a way that made it accessible and usable for all levels of visual impairment. On a practical level, the website needed to provide up-to-date information about the latest research, advice and information on everything from financial support through to guidance on accessible travel destinations. But through a series of calls, surveys and workshops with the LHON Society and the wider community, we soon learnt that the site needed to deliver more than just accessible information — it needed to be a source of inspiration and a place where people understood that they were not alone. A place to connect with other people living with the condition; a hub to provide emotional and well-being support to one another. Therefore, building in functionality for the LHON Society to embed an array of mixed content on the site — from blogs and news stories, to podcasts and videos — became a crucial component of the design. And, to nurture a sense of community online giving those affected and their families a way to connect and access support at any stage, we introduced a buddy scheme. All the while, user experience was kept in mind, as the LHON Society trustees and our team focused on enhancing the website’s architecture for people with vision loss.
After a final series of user testing to iron out any kinks, the new LHON Society website was officially launched in February 2022.
Focus on accessibility
All stages of the design were created with accessibility in mind, including the logomark itself — which was inspired by the original symbol of the LHON Society. We were conscious that the logo held a lot of meaning for the Society; it had been co-created with the community and was recognised in the field. Therefore, changes were made to the colours and layout to make it feel more modern while still honouring what the Society stood for. Consisting of four coloured marks, the logo represents an eye capturing the purpose of the Society and its website. The discovery phase of the project uncovered that people affected by LHON find that blue is a key colour that often becomes easier to see overtime. The new triad palette was born from the blue in the original logo and has been stress tested against WCAG Accessibility and Criteria which it passed for both accessibility and colour blindness.
“The colours for this rebrand were crucial, to put it bluntly, you can’t design a brand for people with sight loss and not take into account their everyday obstacles, colour being one of them. Working on this project allowed us to see design differently and produce a brand everyone could access.” – Louise Jones, Senior Art Director
The structure of the website is divided into four distinct pillars to represent the four core objectives of the LHON Society: support, community and research. Each of the four pillars take a colour from the logomark ensuring a cohesive design. Together with the carefully selected colour palette, the website layout and typography were designed with accessibility in mind. This built-in accessibility allows people with LHON to use their own visibility aids to navigate content online, something we learnt was key given the variety of tools the community uses depending on what suits them. For those recently diagnosed however, it can take months before they can access the tools they need. With this audience having a high need for information and support, we wanted to make sure they weren’t left out. We therefore also made a decision to add ReciteMe, an assistive toolbar added to the top of the website making it digitally inclusive by allowing visitors to customise content so they can use the website in the way that works best for them.
Whether it be through visual screen adaption aids, translation or audio descriptions, every person living with LHON now has access to this important resource and support network. The website’s new built-in functionality, which can host a range of mixed media types allows the LHON Society to have the independence and flexibility they need to introduce new ideas and types of content how and when they like.
A bright future
Collaborating with the trustees has been a hugely humbling experience. Their determination to help everyone living with LHON and their families has fed into this project at every turn. What began as a rebrand and technical update, quickly became about much more. Inspired by everyone at the LHON Society, we focused on ensuring this platform could provide everything needed to connect and support a community affected by vision loss. The new website has launched but this is only the beginning. Its user-led development means the website is now fit for purpose and gives the Society’s trustees greater scope and flexibility to engage and support the wider LHON community. The LHON Society now has the means to continue their work with an active online presence and greater visibility. This is key in the growth of a rare disease community and in turn has a positive impact on diagnosis, quality of life and ongoing healthcare management.
We’re delighted to have played a role in the LHON Society’s mission to support those affected by LHON, raising awareness of the condition and facilitate greater understanding through research. It is a great example of how important adopting a collaborative approach is when developing a dedicated platform for all affected by a rare disease.