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Rare Disease Day 2024

EDM (Early Day Motion) 435: tabled on 27 February 2024

Tabled in the 2023-24 session.

This motion has been signed by 11 Members. It has not yet had any amendments submitted.

Motion text

That this House notes Rare Disease Day, celebrated on 29 February, which raises awareness on rare diseases that are not commonly known, such as Primary Biliary Cholangitis, Cushings Disease, Sickle Cell and Huntingdon Disease; underlines that there are on average 1 in 2,000 people that suffer with rare diseases, which is around 3.5 million in the UK and 110,000 individuals in Northern Ireland; highlights that there are currently around 7,000 known rare diseases in the world and that the general public is still not educated on most of them; further notes that Rare Disease Day was created by the European Organisation for Rare Diseases on 29 February 2008 and that it is celebrated on 29 February as it is rare day, only occurring once every four years; and urges Government to allocate additional funding into the research of rare diseases and work with the devolved nations to ensure we can take a joint approach to raising awareness.