Rare disease action plan

Scotland’s first action plan for rare disease sets out the actions that we, our NHS, partners and stakeholders will take to improve the lives of people in living with a rare disease. The plan supports the shared priorities of the 2021 UK Rare Diseases Framework.


Footnotes

1. It's Not Rare to Have a Rare Disease - gov.scot (www.gov.scot)

2. UK_Strategy_for_Rare_Diseases.pdf (publishing.service.gov.uk)

3. It's Not Rare to Have a Rare Disease - gov.scot (www.gov.scot)

4. UK Rare Diseases Framework - GOV.UK (www.gov.uk)

5. Genome UK: the future of healthcare - GOV.UK (www.gov.uk)

6. Genome UK: shared commitments for UK-wide implementation 2022 to 2025 - GOV.UK (www.gov.uk)

7. Prevalence charts and tables | EU RD Platform (europa.eu)

8. CPG Report: Improving Care for Rare Conditions in Scotland | Genetic Alliance UK

9. Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study (nihr.ac.uk)

10. Anticipatory Care Planning Toolkit - ihub | Health and social care improvement in Scotland - Anticipatory Care Planning oolkit

11. Anticipatory Care Planning in the context of COVID-19 - Anticipatory Care Planning Toolkit - ihub - Anticipatory Care Planning n the context of COVID-19

12. ACP and neurological conditions - ihub | Health and social care improvement in Scotland - Anticipatory Care Planning and Neurological Conditions

13. PAMIS Digital Passports | PAMIS

14. It's OK to Ask | NHS inform

15. It's OK to Ask – Public messaging campaign from NHS Scotland – Realistic Medicine

16. Mental Health Strategy 2017-2027 - gov.scot (www.gov.scot)

17. About Us | Rareminds

18. Review of Access to New Medicines - gov.scot (www.gov.scot)

19. SMC | Scottish Medicines Consortium

20. Ultra-orphan medicines pathway: guidance - gov.scot (www.gov.scot)

21. Why Medicines Matter | Genetic Alliance UK

22. Video consultations - public and clinician views: consultation summary - gov.scot (www.gov.scot)

Contact

Email: scott.thomson2@gov.scot

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