Empowering patients with ultra-rare diseases to have conversations with family and HCPs
Conversations among family members are crucial for the early diagnosis and treatment of ultra-rare diseases. Removing the taboo around these conversations, encouraging family members to be part of the conversation around diagnosis and ensuring effective disease management to slow progression are key milestones in the patient treatment journey.
We worked closely with the patient community to understand what stands in the way of these conversations, as well as co-create and optimise the solution.
A patient support programme aimed at empowering patients to have conversations with family members and encourage them to see a healthcare professional for assessment, including behavioural interventions such as: