In just one week, over 125 patient organisations signed an open letter calling on the Government to urgently review and refresh the UK Strategy for Rare Diseases before the end of 2020.
What was once a landmark document at its time of publication in 2013, is now obsolete as technologies, policies and systems have moved on.
With this letter, the rare disease community called on the Government to ensure rare disease patients receive high quality services, treatment and support regardless of where they live in the UK.
A copy of the letter was presented to the Minister in charge of rare diseases, Baroness Nicola Blackwood, in time for Rare Disease Day. Rare Disease UK has also requested a meeting with the Minister to ensure that patients and families play an integral role in developing future plans to meet the needs of all those living with rare diseases.