Raremark’s goal is to transform one million lives in rare disease
Last updated: June 2017
Our Community Managers connect families worldwide with up-to-date scientific information, community insights and medical research.
Raremark is privately funded and headquartered in London, with an office in Boston. The company was founded by entrepreneur Julie Walters after seeing first hand the isolation experienced by families affected by rare disease. Revenues come from patient-led market research, providing anonymized patient data to inform drug development and sharing information about research.
How does Raremark help families?
Raremark keeps families updated with the latest research and treatments in development, and enables them to share their valuable experience to help others. We also help people affected by a rare disease be heard by the people developing new treatments. Our aim is to bring the voice of the community into the development of new medicines, so they are produced with families in mind.
How does Raremark help healthcare professionals?
We know how difficult it can be to find information about rare disease that is easy to understand. Our main remit is to help families affected by rare disease and we encourage them to discuss with their doctor the crowd-sourced experience on Raremark. We want families to feel more informed about their conditions and comfortable discussing them with healthcare professionals. We do not give medical advice.
How does Raremark work with industry?
Our community is motivated 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. One way in which we may support pharmaceutical companies is by allowing them to place an ethically-approved advertisement on our website. Another way we may support them is by sharing our community’s experience, anonymously, so that companies investing in new treatments can understand what it is like to live with a condition. Our Community Managers have complete discretion over the editorial content on the Raremark site and make decisions about what to publish based on what would be of most use to families affected by rare disease. Pharmaceutical companies do not influence the editorial content we provide the community and do not have access to our database.
How does Raremark work with patient groups?
Raremark works with patient groups to help them bring real-world patient experience to key decision makers in industry. The work of patient groups and Raremark is complementary: we reach families internationally and provide connections through technology to support the hard work of patient groups. We also work with patient groups to understand what the biggest challenges are in each community, so that we can make sure these are heard by the companies that are working in that condition. Each Raremark community has a Useful Resources section where community members can find patient groups and other relevant resources.
How does Raremark make money?
In rare disease, one of the biggest challenges in launching a new treatment is finding the right people to help develop it and understanding what it is like to live with a condition. Raremark is an independent company that helps to bridge that gap between families and industry. A pharmaceutical company may pay us to tell our community about medical research it is conducting, or a research study it is sponsoring, or to ask our community what they think about a certain trial or drug.
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