- Global Genes. Rare diseases: facts and statistics.
Available at: http://globalgenes.org/rare-diseases-facts-statistics/ En son erişim tarihi Ocak 2015. - Rare Disease UK.
Available at: http://raredisease.org.uk/index.htm En son erişim tarihi Ocak 2015 - Bavisetty S, Grody W, Yazdani S. Emergence of pediatric rare diseases. Rare Diseases 2013; 1:1, e23579, DOI: 10.4161/rdis.23579.
Available at http://www.tandfonline.com/doi/full/10.4161/rdis.23579 En son erişim tarihi Ocak 2015. - EURORDIS. The voice of 12,000 patients: Experiences and expectations of rare disease patients on diagnosis and care in Europe. 2009.
Available at: http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf En son erişim tarihi Ocak 2015 - Engel P, Bagal S, Broback M et al. Physician and patient perceptions regarding physician training in rare diseases: the need for stronger educational initiatives for physicians. Journal of Rare Disorders. 2013;1:1-15.
Available at http://www.journalofraredisorders.com/pub/IssuePDFs/Engel.pdf En son erişim tarihi Ocak 2015 - Nicholl C. Development of the European Platform on Rare Diseases Registration. Presented at European Conference on Rare Diseases & Orphan Products, 8-10 May 2014.
Available at: http://www.rare-diseases.eu/wp-content/uploads/2014/05/0202_Ciaran_NICHOLL.pdf En son erişim tarihi Ocak 2015 - ECDC. Technical report: A literature review on health information seeking behaviour on the web: a health consumer and health professional perspective. 2011.
Available at: http://www.ecdc.europa.eu/en/publications/Publications/Literature%20review%20on%20health%20information-seeking%20behaviour%20on%20the%20web.pdf En son erişim tarihi Ocak 2015 - Cline R and Hayes K. Consumer health information seeking on the internet: the state of the art. Health Educ Res. 2001;16:671-692.
- Fox S and Jones S. The social life of health information. 2009.
Available at: http://www.pewinternet.org/2009/06/11/the-social-life-of-health-information/ En son erişim tarihi Ocak 2015 - Shire. Rare Disease Impact Report: Insights from patients and the medical community. 2013.
Available at: http://www.shire.com/shireplc/dlibrary/documents/RareDiseaseImpactReportforWeb.pdf En son erişim tarihi Ocak 2015 - Department of Health. The UK Strategy for Rare Diseases. 2013.
Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf En son erişim tarihi Ocak 2015 - Rare Disease UK. Key Statistics from the RDUK Report ‘Experiences of Rare Diseases: An Insight from Patients and Families’.
Available at: http://www.raredisease.org.uk/experiences-key-stats.htm En son erişim tarihi Ocak 2015. - NHS. How is genetic testing applied in rare diseases?
Available at: http://www.geneticseducation.nhs.uk/for-practitioners-62/rare-diseases-in-clinical-practice/genetic-testing-of-rare-diseases En son erişim tarihi Ocak 2015.