Herald Entrepreneur: Sisters are doing it for themselves with not-for-profit magazine

The magazine gives a voice to the hundreds of thousands of people who live with rare diseases in Scotland and elsewhere in the UK. The quarterly digital publication appeals to patients, parents, carers, advocacy groups, charities and health professionals, creating a vital support network based on commonality around what can seem like a disparate set of rare conditions.

Ms Miller’s son Eddison suffers from xeroderma pigmentosum, a DNA repair disorder that affects around 100 people in the UK. The family set up a successful charity to help Eddison and others, but were perturbed by the unhelpful, often negative tone of the media coverage when they tried to highlight their efforts.

They decided to create their own media platform, focusing on information and empowerment, and Rare Revolutions has gone from strength to strength, attracting more than 12,000 readers and growing to support a wider programme of events and initiatives.

“You can do things you’d never have thought possible when you have the right motivation,” says Ms Miller, 39, a former architect who lives in Kent. “One thing we’ve always had is a really strong and clear reason why we’re doing it. We’re all about delivering for the ‘why’. If you keep going with that, you can’t go wrong.”

Every business needs a revenue stream, however, and in order to maximise this Ms Stewart, who lives in Aberdeenshire, recently took part in the region’s Elevator Accelerator programme, which helps entrepreneurs scale their business.

“Taking part has given us the skills and confidence to drive the business forward and hopefully maintain longevity,” says the former hairdresser. “It also helped me see that you shouldn’t be put off from retaining a not-for-profit status. Some believe it’s best to make yourself profitable to be more financially viable.

“But we’ve discovered our not-for-profit ethos is very important to our community, as it makes us more trusted. Be confident that there are different ways to do good business and be taken seriously.

“We do need to make money because of the plans we have to grow, create employment and give back to our community. But as a committed not-for-profit you don’t have to change your way of thinking. We hope to prove that.”

The business has just taken on its first member of staff in the hope of increasing readership and availability of the magazine, and creating more networks and ambassadors across the country.

The unique nature of the venture, meanwhile, has required an innovative and flexible approach to running it, not least because the siblings, who originally come from Speyside, are based 600 miles apart.

“We usually start each week with a list of tasks and always instinctively know who will do what, although we realise that we can’t expect our knew member of staff to be able to dial into this osmosis immediately,” laughs Ms Miller.

“The recruitment process made us think about how to define and assign our roles more. Rebecca is moving into business development, driving revenue and membership, and I’m going to focus on what I do best, the creative side of things. That is naturally where our skillsets are."

And they believe their business has the potential to offer a host of new and varied opportunities to both adults and children affected by rare conditions.

“Last year we launched a youth magazine – created by children with rare diseases – and it was wonderful to see young people who sometimes don’t get the chance to take part in things like work experience, get out there and learn new skills," adds Ms Miller. "They even had the chance to meet Nicola Sturgeon.

“Going forward we want to want to be able to offer work opportunities to people within the community. There’s such an enormous wealth of talent out there. And technology makes everything possible – there are no barriers.”