Today I attended an event in Parliament hosted by Genetic Alliance UK to show my support for people living with rare diseases.
At the event, I received a copy of their 'Rare Alert' report about alert cards for rare disease patients.
NHS England’s pledge in January 2018 to: ‘give every patient with a rare disease an “alert card”, including information about their condition, treatment regime and contact details for the individual expert involved in their care’ is a welcome one, and Rare Disease UK supports the implementation of alert cards for rare disease patients.
Alert cards can be highly effective, offering benefits to both patients and health care professionals, and can ultimately save lives.
I look forward to seeing how Genetic Alliance UK works with the NHS to improve patients outcomes for people living with rare diseases.