The everyday impact of rare diseases: supporting your patient community The impact of rare diseases go far beyond the physical – they have a significant mental and social impact too. But, in the quest to find treatments and address medical issues, these other...
Transforming rare science into treatments Our third workshop of 2018 took place on Monday 19th November, in collaboration with LifeArc, and introduced patient groups to translational research. Translational research can sometimes sound like a bit of a buzzword,...
Fundraising for rare disease patient groups Our second workshop of 2018 took place on Friday 29th June and helped patient groups to improve their fundraising. Being able to raise funds is critical for any rare disease patient group. While many begin as volunteer-led...
Developing your online communications workshop Our first workshop of 2018 took place on Wednesday 28th March and focused on how patient groups can develop their online communications. Good online communications are very important when it comes to rare disease patient...
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