Publication - Report

Rare Disease Scotland: progress report

Published: 28 Feb 2018

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

83 page PDF

1.6 MB

83 page PDF

1.6 MB

Contents
Rare Disease Scotland: progress report
Footnotes

83 page PDF

1.6 MB

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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