Getting heard above the noise: making effective use of social media 23rd-25th June On 23rd June, we hosted a three-day social media workshop that sought to give patient groups the experience, confidence and skills needed to fully utilise the power of social media....
Setting yourself up for fundraising success Funding is of course central to running rare disease charities and being able to execute projects and provide the best support possible to rare disease communities. Many rare disease organisations depend on...
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...
Privacy & Cookies Policy
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.