We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.

Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!

If you would like to share your own story on our blog, please contact Mary Rose, our Head of Operations:

Drug repurposing for rare diseases conference 2024

Every year BM Manifesto holds its conference – Drug Repurposing for Rare Diseases – in late February to celebrate Rare Disease Day. This is a chance for a diverse collection of people with an interest in rare diseases and drug repurposing to gather together and share their knowledge and experiences, and hopefully drive forward the redevelopment of old drugs for rare patients.

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Fantastic Findacuries

The first Friday of March is Employee Appreciation Day, so in this week’s blog Rick gives us a quick insight into the fantastic member of the BM Manifesto team, the work they do on a daily basis, and a few of their quirkier features.Mary Rose As Head of Operations, Mary...

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Rare Disease Week

It has been an exciting and slightly frantic week for the BM Manifesto team, and for everyone in the rare disease world. The build up to Rare Disease Day has been high paced, with events and announcements galore, all with the aim of raising more awareness of rare disease...

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Leading a rare patient group

Our latest workshop on the 22nd January focused on the topic of leadership within a rare patient group. We all know that leadership is a skill we should be very aware of and try to be good at but sometimes it’s hard to know how to start thinking about your own leadership skills. In a patient group context when employees and volunteers are often busy with other things, leaders don’t always have time to reflect on and improve their practice.

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