It's Not Rare to Have a Rare Disease

Footnotes

1. www.scotland.gov.uk/Topics/Health/Services/RareDiseases

2. RDUK - a voluntary sector group representing people with rare diseases and their supporters - www.raredisease.org.uk

3. www.raredisease.org.uk/documents/Research%20Report/rduk-scotland-survey-report.pdf

4. http://www.scotland.gov.uk/Resource/0043/00438631.pdf

5. www.eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF

6. www.gov.uk/government/uploads/system/uploads/attachment_data/file/146814/dh_132883.pdf.pdf

7. Source Eurostat - http://epp.eurostat.ec.europa.eu

8. www.scotland.gov.uk/Resource/Doc/311667/0098354.pdf

9. www.scotland.gov.uk/Resource/0042/00423188.pdf

10. www.scotland.gov.uk/Resource/0043/00439819.pdf

11. www.scotland.gov.uk/Resource/0043/00438631.pdf

12. www.who.int/cancer/palliative/definition/en/

13. Tebbit, National Council for Palliative Care. 1999.

14. Living and Dying Well (2008)

15. www.scotland.gov.uk/Resource/0042/00423188.pdf

16. www.scotland.gov.uk/Resource/0042/00426552.pdf

17. www.scotland.gov.uk/Resource/0044/00444812.pdf

18. www.scotland.gov.uk/Resource/0039/00396711.pdf

19. www.scotland.gov.uk/Publications/2012/12/7791

20. www.ehealth.scot.nhs.uk/wp-content/documents/personCentredStrategy.pdf

21. www.scotland.gov.uk/Topics/Health/Policy/Patients-Rights

22. www.legislation.gov.uk/asp/2004/7/section/2

23. www.nhsinform.co.uk/Rights/UsingNHS/PatientCharterSummary

24. www.healthcareimprovementscotland.org/our_work/person-centred_care/person-centred_collaborative.aspx

25. www.pcgs.org.uk/SGCNcombined.pdf

26. www.scotland.gov.uk/Resource/Doc/146336/0038294.pdf

27. www.sehd.scot.nhs.uk/mels/CEL2012_29.pdf

28. http://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_10-en.pdf

29. www.scotland.gov.uk/Resource/0044/00441799.pdf

30. www.rarebestpractices.eu

31. http://www.crn.nihr.ac.uk/genetics/

32. Commitment 24 of the Strategy - www.scotland.gov.uk/Resource/0043/00438631.pdf

33. www.scotland.gov.uk/Publications/2008/05/06084423/6

34. www.cso.scot.nhs.uk/wp-content/uploads/2013/02/research.pdf

35. J Neurol Neurosurg Psychiatry. 2012 Jul;83(7):719-24. doi:10.1136/jnnp-2011-301546. Epub 2012 May 10

36. Trials that do not involve an Investigational Medicinal Product (IMP) as defined by the MHRA, and therefore do not fall within the scope of the Medicines for Human Use (Clinical Trials) Regulations 2004.

37. www.bsgm.org.uk/genetics-healthcare-research/nihr-uk-rare-genetic-disease-research-consortium-agreement/

38. www.generationscotland.org/index.php?option=com_content&view=article&id=4&Itemid=8

39. www.pathologyscotland.org/