Context
The Rare Disease Research Network brings together patients, advocates, researchers and other contributors who want to shape and support research.
The community needed more than a publishing website. Different users needed to register, create profiles, discover people and research ideas, filter information, access resources and collaborate within clear permissions.
The challenge
The product had to translate a community-led vision into usable journeys and maintainable functionality.
That meant balancing different perspectives, technical constraints, accessibility, permissions, search, content and the practical needs of the team operating the platform after launch.
My role
I worked with the main community working group and three specialist teams over approximately eight months.
My role was to turn collaborative discussions into prioritised user journeys and working functionality. I translated ideas into requirements, clarified decisions, shaped the platform and kept the technical work connected to the needs of the community.
The patient-led vision belonged to the network. My contribution was making that vision operational as a digital product.
Product decisions
The platform was shaped around several connected needs:
- Registration and authenticated access.
- User profiles that help people explain their interests and experience.
- Permissions appropriate to different types of participation.
- Search and filtering across people, research ideas and projects.
- Discovery journeys that support useful connections.
- Content and resources that remain understandable outside the working groups.
This required product judgement across the whole journey, not just delivery of individual page templates.
Delivery
The work progressed through collaborative requirements, functional development, wider consultation, pilot testing and preparation for public use.
A functioning platform milestone was reached by June 2024. Feedback and refinement continued ahead of public launch at Rarefest in November 2024.
Outcome
The result was an authenticated community platform with registration, profiles, permissions, search, filtering and research project discovery.
The strongest evidence comes from the client. The public project story credits me with listening to the community and translating its ideas into the finished platform.
Evidence and limits
No adoption, membership or research-impact figures are claimed without current evidence. The case study demonstrates collaborative product translation and delivery, not ownership of the community’s vision or a quantified research outcome.