How do you support a grassroots rare disease charity to become self-sufficient in their marketing and awareness raising activities and embed accessibility into their online presence?
LHON (Leber’s Hereditary Optic Neuropathy) is a rare mitochondrial disease that leads to central vision loss and predominantly affects young men during their late teens — early 20s. 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 LHON — whether personally or as a family member. But, having been built “on a shoestring”, the existing site faced accessibility and security issues. When combined with limited time and resource, the Society were struggling to mobilise and engage their community.
During our stakeholder engagement phase, we learnt that the website delivered on its aim of providing information for those newly diagnosed. But it didn’t give people a reason to come back. When living with something so rare, people are comforted and engaged most when they don’t feel alone and have hope for the future.
Inspired by the logomark and the Society’s ambitions, the website was divided into four distinct 'pillars' to simplify and highlight the objectives of the charity: Information, Support, Community and Research.
Building an accessible website was a must, but it needed to do more than just deliver credible information. It needed to be a source of inspiration — a hub where ‘living with LHON’ felt manageable and those directly and indirectly affected by LHON felt connected.
From the layout and navigation to the typography and colour scheme, every part was user-tested and shaped to ensure it met a variety of visual needs and user interests.
The new triad palette was stress tested against Web Content Accessibility Guidelines to ensure it passed both accessibility and colour blindness checkpoints.
Embedding a buddy scheme alongside additional functionality for videos, blogs and podcasts aimed to better connect the LHON community through shared guidance, experiences and life stories.
A ‘How-to website manual’ and ‘Communication and engagement guide’ gave the trustees the knowledge and confidence to expand the site themselves going forward.
The site build gives the LHON society simple, pragmatic functionality and the independence to introduce new ideas and types of content how and when they like. And thanks to the addition of an in-built accessibility toolbar offering translation or audio descriptions on top of visibility support, every person affected by LHON now has access to their community resource and support network.
“From our very first meeting with Cuttsy we knew that they would be a perfect fit for our project. The team made sure they understood not only our requirements, but the unique needs of our community and they went out of their way to ensure that those needs were met with new branding and a totally redesigned website.” - Mark, LHON Society Trustee