Raremark founder Julie Walters.
London startup Raremark, founded in May 2016, has already helped at least 2,000 people affected by one of seven different rare diseases.
But founder Julie Walters has much bigger ambitions.
An estimated 350 million people suffer from rare diseases, but being diagnosed with one is an isolating experience for the patient as well as for their families.
On average, patients are misdiagnosed three times, Walters told Business Insider, then they face a lack of treatment options. “The family becomes the expert,” she said.
That’s where Raremark comes in. It wants to create an online community for up to 400 types of rare disease, having done so for seven already (across which it has 2,000 members) so those suffering can connect with similar patients who would otherwise be impossible to find.
“It’s being able to read a story about someone going through what you’re going through, and the wisdom is led by the community,” Walters said.
Raremark finds and provides each community with up-to-date scientific information (in a way they can actually understand), as well as providing patients information and access to clinical trials for new treatments and drugs being developed.
By bringing together its members in one place, it can then help drug companies find patients for clinical trials that they would otherwise struggle to find. Raremark generates its revenue by providing those companies access to its members as well as data on them necessary for developing treatments.
Cystic fibrosis is one of seven rare diseases Raremark covers on its website.
It was when her goddaughter was diagnosed with a rare form of Leukemia that Walters, who holds a first-class degree in Molecular Genetics, was inspired to set up Raremark. “She was just in the right place at the right time, within six months she received a vital bone marrow transplant,” Walters said. “And now she just graduated with a first in International Relations from the London School of Economics.”
Nick Sireau, the father of two boys with the rare condition alkaptonuria (known as black bones disease), told Business Insider that the access to clinical trials is where Raremark makes a difference. “One of the problems patients face is a lack of access to really understandable scientific information that can help them move forward, and also access to the right clinical trials. That’s where Raremark comes into its own.”
To find a cure for his boys, he quit his job, founded a patient group called the AKU Society, and has since raised £20 million. “Originally we started very small, it was myself running half marathons,” he told Business Insider. “Raremark is exactly what is needed. One of the main reasons clinical trials fail is because they don’t manage to recruit enough patients. Raremark helps the recruitment of patients for clinical trials, that’s a very important aspect.”
The seven rare diseases Raremark has so far created communities for.
Walters spends a quarter of her time in Boston, where the world’s centre for rare disease is based.
Raremark has so far raised £670,000 in a seed round in May 2016, led by the Cass Entrepreneurship Fund, and Walters is hoping to raise a Series A round soon.
It’s not the only startup helping patients find medical trials. London-based Antidote, founded in 2009, has built a website that aims to match patients with trials, while also helping pharmaceutical companies to find patients to test new drugs on.
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