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Motion · S6M-08071 · 28 Feb 2023

Rare Disease Day 2023

Lodged by Bob Doris (Scottish National Party) Members' Business Motion 36 supporters

The motion

That the Parliament notes that Rare Disease Day 2023 takes place on 28 February and that the theme for the global day is Share Your Colours, which is a call to patients, governments and all stakeholders in positions of power to do all that they can to remove the stigma around patients with rare diseases, and to work collaboratively to raise awareness of the challenges that such patients face; welcomes that this year will see the return of an in-person rare disease parliamentary event in the Scottish Parliament on 15 March; recognises the significance of Rare Disease Day and annual parliamentary reception to people in Scotland with rare diseases; understands that over 320,000 people in Scotland are living with a rare condition; further understands that one in 17 people will be affected by a rare condition at some point in their lives and that the majority of rare conditions have no effective treatment; understands that, on average, it takes over four years to receive an accurate diagnosis of a rare condition, and that there are over 7,000 rare conditions, including rare cancers such as childhood cancers and other well-known conditions such as cystic fibrosis and Huntington’s disease; welcomes the publication of the Rare Disease Action Plan for Scotland, which launched on 19 December 2022; notes the view that there is a need for ongoing engagement with people with rare diseases to ensure that the plan is successfully implemented, and further notes the belief that the plan should form the basis of ongoing engagement with people in Scotland with rare diseases in order to deliver for those with rare, genetic and undiagnosed conditions, as well as their families.

Supporters (36)

Source: the Scottish Parliament motions and amendments record.