Raremark

Raremark is an independent, privately funded company founded by entrepreneur Julie Walters to improve life for people affected by rare diseases. Headquartered in London, with an office in Boston, it connects families internationally through online communities supported by Community Managers. These managers share accessible scientific information, community insights and updates on medical research and treatments in development. Raremark also helps families share their experiences, become better informed and bring their perspectives to the attention of researchers and treatment developers. It does not provide medical advice.

Raremark operates a patient-powered research network and works with pharmaceutical companies and patient groups to support research and accelerate drug development. Its services include patient-led market research, ethically approved research or study communications, and sharing anonymized community experiences to help industry understand what it is like to live with a condition. Raremark says pharmaceutical companies do not control its editorial content or access its database.