Last week I attended the kickoff meeting for the Rare Disease Research Network in Cambridge. Its purpose being to develop a strategy for designing and developing the network over the coming months.

Following a lot of discussion around functionality and the sort of features to include, we eventually came to a conclusion that scope creep could be a bit of a roadblock, so we might be best served by having a tight focus in the first instance while we develop the proof of concept.

Many of the people attending the meeting had inspiring stories about their own experience with rare conditions, including some who are caregivers to family members, or who work in organizations that provide support to the rare disease community.

The whole event was very energizing and once again helped underline for my why it is I’m pleased to work in this industry and hopefully be able to make a real difference to people’s lives.