The Scottish Parliament Rare Disease Day Online Reception 15/03/2023

Attempts to improve access to care in Scotland

Nerve Tumours UK joined the reception at the invitation of Bob Doris MSP, Convener of the Cross Party Group for Rare, Genetic and Undiagnosed Conditions, organised by the Genetic Alliance UK.

Speakers, including Emily & Kimberley, described their experience of access to care, when living with a rare condition:

If rare conditions are recognised, many feel that their condition, and any associated challenges, would be manageable.

Maree Todd, Minister for Public Health & Women's Health and Sport, delivered an update on the implementation of the Rare Diseases Plan and its roll out in Scotland, detailing the changes and iteration to the original plan, based on new findings by patients and relevant stakeholders.

The plan can be seen on the attached link:

https://www.gov.scot/publications/rare-disease-action-plan/