Rare Revolution Magazine is published quarterly and reaches over 4000 readers in the rare disease community. The digital magazine is dedicated to giving rare disease a voice. The Rare Revolution Magazine features ‘The People of Rare’, these are interviews with CEOs of professional organisations, and the Editors describe the interviewees as ‘the beating hearts who are making their mark on the work of rare disease’.

The interview with HCD Economics CEO Jamie O’Hara was published on 15th June (2020 summer edition – no 16), and can be found here. Jamie joins a faculty of interviewees drawn from Charities, Technology companies and consulting organisations, all dedicated to addressing the needs of the rare disease community.

Rare Revolution Magazine was created in 2016 by the BMA award winning writers and sisters Nicola Miller and Rebecca Stewart. The magazine is a voice and a platform for patients, industry, professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. The magazine provides a space where all of these rare disease parties can come together in one place to all become better informed and cross promoted, while benefitting from shared experiences and best practise.

The editors state, ‘we are so much more than just a publication, we are a movement! We host a growing online private Facebook community to provide a safe place for people affected by rare disease to share their experiences and reach out to others who we engage with and support daily. This is also our own global working party who are helping us develop future projects and initiatives.We are our community, and our community are part of us - we are shaping our future together!

Jamie O’Hara was enthusiastic to collaborate with Rare Revolution Magazine and to be able to add his voice to share his experience and commitment to applying health economic and real world evidence best practice, to serve the advocacy needs of the rare disease community.