Visit the Global Genes website to download educational toolkits:

• Becoming an Empowered Patient: A Toolkit for the Undiagnosed
• Genetic Testing: Is this my Path to a Diagnosis

Shire is not responsible for any of the information contained in this toolkit

References

1. Global Genes. Rare diseases: facts and statistics.
   Available at: http://globalgenes.org/rare-diseases-facts-statistics/ Last accessed January 2015.
2. Rare Disease UK.
   Available at: http://raredisease.org.uk/index.htm Last accessed January 2015
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   Available at http://www.tandfonline.com/doi/full/10.4161/rdis.23579 Last accessed January 2015.
4. 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 Last accessed January 2015
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   Available at http://www.journalofraredisorders.com/pub/IssuePDFs/Engel.pdf Last accessed January 2015
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   Available at: http://www.rare-diseases.eu/wp-content/uploads/2014/05/0202_Ciaran_NICHOLL.pdf Last accessed January 2015
7. 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 Last accessed January 2015
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   Available at: http://www.pewinternet.org/2009/06/11/the-social-life-of-health-information/ Last accessed January 2015
10. Shire. Rare Disease Impact Report: Insights from patients and the medical community. 2013.
    Available at: http://www.shire.com/shireplc/dlibrary/documents/RareDiseaseImpactReportforWeb.pdf Last accessed January 2015
11. 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 Last accessed January 2015
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    Available at: http://www.raredisease.org.uk/experiences-key-stats.htm Last accessed January 2015
13. 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 Last accessed January 2015.