Our Community Managers connect people affected by a rare disease with up-to-date scientific information, community insights and medical research.

How does Raremark help families?

Raremark publishes easy-to-understand information on the latest research and treatments in development, and enables those affected to share their valuable experience.

How does Raremark help healthcare professionals?

Doctors can find it difficult to recognize someone with a rare condition. On average, a person with a rare disease can expect to be misdiagnosed three times in eight years. We help to educate patients, so they can help their doctor to recognize their symptoms. We want people to be more informed about their condition and comfortable discussing options with their healthcare team. We do not give medical advice.

How does Raremark work with industry?

Our community wants to play an active role in research. We are a patient-powered research network, and we partner with the pharmaceutical industry to help accelerate drug development. We do that by advising about clinical trials on our website. We also share our community’s experience, anonymously, so that companies investing in new treatments can understand what it is like to live with a particular medical condition. Our Community Managers have full discretion to decide what editorial content to publish on the Raremark website. Apart from sponsored advertisements, which are clearly marked as such, pharmaceutical companies do not influence our editorial content, and they do not have access to our database.

How does Raremark work with patient groups?

Raremark collaborates with patient groups on specific projects that are complementary to their own work. We bring international reach and the latest technology, which can be helpful to patient groups because their focus is usually limited to a single country.

How does Raremark make money?

One of the biggest challenges in developing a new treatment for a rare disease is finding the right people to test it. A pharmaceutical company may pay us to advertise a research study it is sponsoring, or to conduct market research to find out what our community members think about a certain clinical trial or drug.

What else should I know about the company?

Raremark is privately funded and headquartered in London, UK, and we also have a US office in Boston, MA. The company was founded by entrepreneur Julie Walters after seeing the isolation experienced by people affected by rare disease.

The company’s work has won multiple awards, including the UK Business Angels Association’s Entrepreneur of the Year, and it was recently named as a changemaker at the 2018 London Tech Week. We have been awarded the HONcode certification in recognition of our trustworthy health information.

Raremark’s formal company name is ePatient Network Ltd, a limited company registered in the UK with the company number 06262589. Our team first came together in 2007. We launched Raremark in 2016.

In the United States, Raremark’s formal company name is ePatient Network Inc; a wholly-owned subsidiary.

Last updated: December 2018

Community contact

For patients & families

T +44 (0)20 7034 3216

Partnering contact

Julie Walters

T +44 (0) 20 7034 3216

M +44 (0) 775 362 6967

Media contacts

Pete Chan

T +44 (0) 20 7034 3216

M +44 (0) 775 328 0299