The partners say that the initiative can make a particularly important impact for patients with rare diseases since such patients often find it difficult to explain their complex medical history to doctors.
The work of both Raremark and Findacure has a particular focus on rare diseases.
Findacure, founded in 2012 by a serial social entrepreneur Nick Sireau and a pharmaceutical physician Tony Hall, is building the rare diseases community to drive research and develop treatments.
The recently launched Raremark, led by a former journalist and a serial entrepreneur Julie Walters, is an online platform for patients and families affected by rare conditions. Through the platform, patients can register their interest in clinical trials and access the latest scientific information about their disease.
The new digital timeline will summarize a patient’s medical history in a visual way and link to key medical reports that doctors can access with the patient’s permission.
Findacure will help find families to take part in research into the digital timeline and Raremark will build the timeline to launch later in 2016.
To support the technical development, Raremark has launched a crowdfunding campaign on Syndicate Room.
“There is so much to be done to help families affected by rare disease, who are often neglected by the health system, just because doctors have not seen someone like them before,” says Julie Walters, who is also a trustee of Findacure.
“The more tools – particularly emerging digital tools - we can place in the hands of families, the better.”
Flόra Raffai, Executive Director of Findacure adds: “Rare disease patients visit a range of specialists and medical practitioners, and so their medical history can become disjointed and confused.”
Ms. Raffai believes that this timeline will allow patients to take control of their data and ensure both patients and doctors are on the same page.