Users and target audience
The users and target audience were people affected by rare disease, primarily patients, parent/carers and family members. The user base mostly consisted of people in the US and Europe but did include people from other parts of the world. This meant a great emphasis on accessibility and inclusivity.
User goals and needs ranged from people knowledgeable in their condition, and therefore wanting to take part in research (find a cure) and be advocates; to people who were recently diagnosed, knowing little about their disease and wanting to learn more and find their community.
The ideal experience involves a web/mobile app that can be a 'one-stop-shop' for all their information needs relating to rare disease. This could include life-hacks, tips, discussions as well as information on research opportunities.
Their pain points include lack of access to information, the information not being plain-language and being difficult to understand and similar resources lacking in personalisation and any sort of delight and consistent engagement.
Existing technology and information sources include mobile and desktop devices (most users on mobile) and websites like The Mighty, Rareconnect and Inspire.
Working here for a number of years, my role and responsibilities evolved over time. During my time, I worked with a senior designer and user researcher as part of the design team, and closely with the product owner, engineers and QA as part of a wider product team. Other stakeholders included content, research and analysis, business development and clients. My responsibilities included:
UX Research - This involved stakeholder information gathering, identifying needs and facilitation to define problems
UX Design - Mapping user flows and experiences, sketches and documentation
Visual design - The finalised UI, look and feel of features to be implemented
Interaction design - Design of states and how users engage and interact with the site
Prototyping - Useful for stakeholder meetings and facilitation, as well as communicating with developers
Design language system management - Establishing and championing the design language system, as well as maintenance and improvements
Content and marketing support - Producing social and print materials, including reports, social media posts and infographics