Our family: living with a rare condition
Although there are more than 6000 rare diseases, having one isn’t rare. People with rare diseases often have to wait years for a diagnosis, have difficulty accessing the treatment and care they need and can feel alone because they don’t know anyone else affected by the same condition as them.
Rare Disease UK is a campaign run by Genetic Alliance UK and it aims to ensure that everyone living with a rare disease in the UK has access to the right care and treatment, no matter where they live.
This video was produces for Rare Disease Day 2018, to raise awareness of the difficulties patients and families face in trying to get a diagnosis, expert help and coordinated care – so that no one is left behind because they have a rare disease.
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