The busy Raremark offices in London’s Soho are filled with earnest, focused 20- and 30-something techies building a website that could potentially help millions of people around the world. When it launches this summer, this pioneering online resource could transform the lives of people affected by rare diseases.
It’s been founded by serial healthcare entrepreneur Julie Walters, 52. Having studied molecular genetics and worked under Alastair Campbell, this health technology service for people with rare diseases is her latest venture.
She wants to help families to find out about new treatments and get the best specialist doctors from around the world. Help is hard to come by if you are isolated geographically, making online help invaluable.
At present, information about treatments is written for the medical world. It is complicated, jargon-filled and difficult to understand. Raremark is going to make this information accessible and comprehensible for patients, their families and their carers alike.
This is Walters’ third business, having previously established Tudor Reilly Health, a digital healthcare specialist, and Media Speak, a communications company. She started her career as a journalist in her native Australia at The West Australian Daily, which she says was a great training ground. Her first job was writing the world weather.
Then she came to Fleet Street and worked on the Today newspaper, when Alastair Campbell was the news editor, and had stints at Thames News and TV AM, where she was sent to the Gulf War as a foreign correspondent for two months. She switched careers after having her first child.
After I had my children I did a degree in molecular genetics at Kings College, London. I love the logic in science; great critical thinking backed up with evidence. But I wanted to help people in the world of science to communicate as often it is quite complicated.
I stumbled upon the pharmaceutical industry, which is complex and full of amazing people like virologists and cancer specialists who find it difficult to explain what it is.
I saw that the pharmaceutical industry had a lot of challenges, including clinical trial recruitment. There are lots of people who want to take part but don’t know how. They also have to understand that it’s an experimental drug, it might not work, and they may be up against a placebo.
I realised, in trying to help people find out about clinical trials, that the biggest challenge is in rare disease. There are 350 million people in the world who have one, 7,000 different kinds and only 200 treatments.
So if you have a rare disease the chances are there is nothing out there. You will be given a treatment that will treat the symptoms, such as the pain or aching, but won’t get to the fundamental problem; the underlying cause of the disease.
There are now drugs that can really help and the pharmaceutical industry is getting interested in rare disease. There is both a business opportunity for the pharmaceutical companies and a great chance for them to do good.
It is important that Raremark is independent, so that we are truly an independent connector between families and carers and the pharmaceutical companies and others that can help them. We are privately funded so have investors who believe in us and are prepared to come on the journey with us.
We will make money from connections to the pharmaceutical industry. So, say a mother of a child with a rare disease finds out from Raremark about a clinical trial that is possible for the child. She then goes to meet the doctor and finds out what is involved and the history of the drug. If she decides to take part, we get paid.
Hiring the wrong people for the job. That’s about cultural fit. Not everyone is suited to an entrepreneurial environment. It’s harder as it’s smaller, so you have be flexible, bold, intellectually curious and responsible.
I am good at starting from nothing. I can start with a blank piece of paper. When it gets too big and China is deciding how to co-ordinate resources with our San Francisco office that is not for me. I always want to be innovating and if it starts to become the same I get bored.
I will always be an entrepreneur in healthcare. That’s what I do. It’s important for me to keep learning. I need to find the best tech people. If you want to go fast, go alone, but if you want to go far, you need to go together.
G Go for it
U Do something you understand
T Be tenacious
S Support: you need people around you