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In this episode, David Rose of Rare Revolution Magazine talks about his inspiring work advocating on behalf of individuals living with rare diseases to bring about dramatic and wide-reaching change.
David Rose has an ultra-rare condition called Occipital Horn Syndrome. He has been doing talks on rare disease life for the last 7 years at various events and conferences.
For the last 3 years, David has been working for Rare Revolution Magazine – a magazine focusing on rare diseases. Through his role in marketing and also business development – he has met so many fantastic rare disease advocates and industry professionals from all over the globe.
Alongside his work at the magazine, David volunteers for a cause close to his heart – Great Ormond Street Hospital.
David recently joined Mitrofanoff Support as one of the trustees in January. David has been using a mitrofanoff since the age of 7, back in 1995, which was carried out by Great Ormond Street Hospital in London.
Rare Revolution Magazine gives a voice – and a platform – to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions.
Created by BMA award winning, featured writers and sisters; Nicola Miller and Rebecca Stewart, who identified a huge gap in the industry, Rare Revolution is a space where all of these rare disease parties can come together in one place to all become better informed and cross promoted, while benefiting from shared experiences and best practise.
Rare Revolution Magazine is a unique, first of it’s kind publication, dedicated to giving rare disease a voice.
It’s time to turn the tide and make our collective voices heard.
What makes Rare Revolution Magazine unique?
Accessibility: not only do we share the latest research, drug development and technology advancements but we break down all the technical jargon into a digestible format for everyone to understand.
Cross promoting: we are building lasting relationships with RARE charities, across all diseases and syndromes, to provide a platform to shout about the amazing and innovative work they do. You can find a list of our charities/RareRevolutionaries here.
Communities: 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!
Innovative: we offer our sponsors and investors innovative and individually tailored packages to suit your own business needs. This includes, traditional and digital advertising, social media takeovers, article creation and involvement in our special collaborative projects and initiatives.
To learn more, visit www.rarerevolutionmagazine.com
Difference Makers
Individuals who make a difference through innovative and inspiring charity work
