beta

You're viewing our new website - find out more

Publication - Report

Rare Disease Scotland: progress report

Published: 28 Feb 2018
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.

83 page PDF

1.6MB

83 page PDF

1.6MB

Contents
Rare Disease Scotland: progress report
Footnotes

83 page PDF

1.6MB

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/2017/06/1327

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/


Contact