As a community, we are only as strong as our most prominent voices—and now those voices have another forum to be heard! The release of RARE Revolution Magazine this September is chance for patients to learn about new studies, hear stories from other patients, and see how rare disease is affecting your world.
Background to Rare Revolution
Four years ago Nicola Miller and her sister Rebecca Stewart founded a charity called Teddington Trust after Nicola’s son who was diagnosed with Xeroderma Pigmentosum at just 13 months old. The charity had grown beyond their expectations and now support families globally. These patients have a number of very large projects and campaigns and are constantly frustrated at the difficulties of getting their voice heard.
“When we go to the media with great projects we need help with, they swoop on it immediately, after all XP is very rare; but instead of wanting to promote and shout about our work, they always want to drop this and go to the personal back story.” says Miller. “Who is my son? What is his life like? And then you get the unnecessarily shocking head-lines. “Boy in a Bubble” “Boy Dying from Sunlight!”’
Miller wanted to change the conversation.
“Yes of course to raise true awareness of a condition or cause, you need to understand the challenges and issues, but what we have found is that in all of this the real message, of “awareness” and how others can help gets lost.”
With the idea that what the community needed was a platform by charities, for charities—the concept of RARE Revolution Magazine was born.
“We are two sisters with a mission and passion to represent patients, charities and pioneers in the RARE community to encourage engagement, collaboration, support and nurture, and to have their voice heard in the only voice that matters – theirs.”
Currently, in order to reach an international readership, the publication will remain digital. Though Miller admits that in the future, a hard copy version may become available. Contributions and content in the form of patient stories, clinical and research developments, charity news and more are welcome and can be sent to editor@rarerevolutionmagazine.