Rare Disease Day 2022 – ‘Patient & Public Involvement in Era of ATMPs’

Posted Posted in Awareness Days, Events, Media

In celebration of Rare Disease Day 2022, we have partnered with the Association of the British Pharmaceutical Industry (ABPI) to raise awareness of the importance of patient and public involvement (PPI) to achieve greater access to advanced therapy medicinal products (ATMPs) for rare diseases. ATMPs that aim to repair, replace, regenerate and re-engineer genes, cells […]

A Rare Life Together - Andy & Jackie

A Rare Life Together – Factor-ing in Haemophilia!

Posted 2 CommentsPosted in Awareness Days, Haemophilia Stories

It’s officially Rare Disease Day 2018 – the major event of the year where the global rare disease community come together in unity and solidarity, to champion for our rights and further the rare disease cause (see Rare Disease Day 2018 – Join in and #ShowYourRare) I could have so easily focussed here on what’s happening […]