Today I’m delighted to be involved with the Cambridge Rare Disease Network participating in a working group meeting to help develop their Rare Disease Research Network – which is building an ecosystem of partnerships and resources to facilitate new patient-centered research opportunities.

Recruiting patients for rare disease trials obviously comes with its own difficulties – not least of which the fact the potential patient population is going to be smaller than for more common diseases and conditions.

Certainly rare disease patients are active on social media and other websites, so a digital outreach approach is definitely one of the methods that can be used successfully.

And what I’m hoping will be developed with this new network is a more comprehensive set of tools that can be utilized for effective recruitment and retention of patients into trials for rare diseases. With the overall goal of fostering true collaboration between patients, sponsors, and other trial stakeholders to deliver better results for everyone.