Date lodged: 16 March 2017
To ask the Scottish Government what action it is taking to raise awareness of Lynch syndrome.
Answered by: Aileen Campbell 30 March 2017
In June 2014 the Scottish Government published its rare disease implementation plan ‘It’s Not Rare to Have a Rare Disease’. The key aims of this plan include improvements to:
Data, Patient Registers and Research – gathering and making accessible patient data to relevant health professionals through robust and secure patient registers and continue to progress rare disease research.
Patient Involvement and Patient Pathways – to develop and deliver person-centred rare disease services and to ensure everyone with a rare disease follows a clear, well defined care pathway for diagnosis, support, treatment and on-going care.
Equity of Access – to develop educational and training programmes in rare disease for all relevant professionals, and provide access to information on rare diseases and support services.
The rare disease implementation plan can be found at the following link: http://www.gov.scot/Resource/0045/00455471.pdf.