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Publication - Progress report

Rare Disease Scotland: progress report

Published
28 February 2018
Directorate
Healthcare Quality and Improvement Directorate
Part of
Health and social care
ISBN
9781788516617

An update on the work carried out in Scotland against the 51 Commitments in the UK Strategy for Rare Diseases.

View supporting documents Supporting documents

Footnotes

1. http://www.gov.scot/Publications/2014/07/4751

2. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf

3. https://www.raredisease.org.uk/media/2364/ukrarediseaseforum-progress-report-2016.pdf

4. http://www.gov.scot/Resource/0051/00511950.pdf

5. http://www.audit-scotland.gov.uk/report/nhs-in-scotland-2016

6. http://www.gov.scot/Resource/0048/00487884.pdf

7. http://ihub.scot/media/2665/kis-best-practice-statement-from-the-scottish-government.pdf

8. http://www.gov.scot/Resource/0049/00492520.pdf

9. http://www.gov.scot/Publications/2014/06/9850

10. http://www.healthliteracyplace.org.uk/

11. http://www.gov.scot/Resource/0052/00528139.pdf

12. http://www.gov.scot/Publications/2016/02/8618/7

13. https://www.alliance-scotland.org.uk/

14. http://www.whatmatterstoyou.scot/

15. https://www.careopinion.org.uk/info/care-opinion-scotland

16. http://www.scottishhealthcouncil.org/patient__public_participation/our_voice/our_voice.aspx

17. http://www.nsd.scot.nhs.uk/about/nssc.html

18. http://www.gov.scot/publications/health-social-care-standards-support-life/

19. http://www.legislation.gov.uk/asp/2016/14/contents/enacted

20. https://news.gov.scot/news/franks-law

21. https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc

22. http://www.nsd.scot.nhs.uk/services/screening/newbornscreening/index.html

23. https://ukgtn.nhs.uk/

24. http://www.nsd.scot.nhs.uk/services/specserv/molgen.html

25. http://www.mpep.scot.nhs.uk/

26. http://www.pathology.scot.nhs.uk/molecular-pathology-consortium/

27. http://www.mcns.scot.nhs.uk/types-of-network/national-networks-in-scotland/nmcns/

28. https://www.britishlivertrust.org.uk/liver-information/liver-conditions/porphyria/

29. http://www.atypicalhus.co.uk/ahus-2/what-is-ahus/

30. https://www.nhs.uk/conditions/neurofibromatosis-type-2/

31. http://www.vasculitis.org.uk/content/downloads/understanding-vasculitis-factsheet-june-2014.pdf

32. https://www.nhs.uk/conditions/behcets-disease/

33. https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

34. https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease

35. https://hdscotland.org/

36. http://care.hdscotland.org/

37. http://www.gov.scot/Publications/2015/03/5705

38. http://www.gov.scot/Publications/2016/12/9192/0

39. https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs

40. http://www.healthcareimprovementscotland.org/about_us/what_we_do/research/rare-bestpractices.aspx

41. https://ec.europa.eu/health/rare_diseases/european_reference_networks_en

42. http://www.gov.scot/Publications/2017/02/5322/1

43. https://www.registerforshare.org/

44. http://www.nhsresearchscotland.org.uk/

45. https://www.scottishgenomespartnership.org/

46. https://www.genomicsengland.co.uk/the-100000-genomes-project/

47. https://www.mndassociation.org/about-mnd/where-do-i-start/what-is-mnd/

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