The digital timeline, set up by Raremark and Findacure, will summarise 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.
Raremark and Findacure have seen first-hand how patients with a rare condition find it difficult to explain their complex medical history to doctors. To support the technical development, Raremark has launched a crowdfunding campaign on Syndicate Room.
Julie Walters, founder of Raremark and a trustee of Findacure, said: “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. The more tools – particularly emerging digital, tools – we can place in the hands of families, the better.”
Flόra Raffai, executive director of Findacure, added: “Rare disease patients visit a range of specialists and medical practitioners, and so their medical history can become disjointed and confused. This timeline will allow patients to take control of their data and ensure both patients and doctors are on the same page.”
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