CureNURR1 is delighted to have partnered with Citizen Health.

Citizen Health empowers patients with over 80 rare conditions to take control of their health journey by enabling them to easily access and utilise their own medical records. If you are living in the United States, it centralises medical data from all providers in one secure location once you consent, and then provides AI-driven tools so that you can search all of your data, prepare for medical appointments and access shared clinical knowledge from our community.

At the same time, it will allow CureNURR1 to create a digitised ‘natural history’ dataset from the aggregate, de-identified data of patients in order to accelerate critical research efforts and ensure that we are ready for future trials.