The power of the patient voice is phenomenal, and inspires, motivates, informs, challenges and advises us during our awareness seminars. It may sound simple – share your experience and raise awareness; however the patient voice goes far beyond story-telling. Many patients reveal the challenges they have faced getting a proper diagnosis, what taking medicines is like, how it is to be a clinical trial participant, the hurdles of getting access to medicines, the side effects of treatment, remembering to a take their medicine(s), their unmet needs and what they’d like to see from future medicines and research.