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21	Rare Disease Impact Report: Insights from patients and the medical community April 2013 This report was commissioned by Shire and developed in collaboration with an external advisory board. Add to Reading List Source URL: www.shire.com Language: English - Date: 2014-05-27 04:58:19 Medical terms Family Epidemiology Caregiver Genetic Alliance UK Medical error Amyotrophic lateral sclerosis Medical diagnosis Nephrology Medicine Health Rare diseases
22	Press Release - EURORDIS welcomes the final adoption by the European Council of the proposed Council Recommendation on European Action in the field of Rare Diseases Add to Reading List Source URL: www.eurordis.org Language: English - Date: 2009-08-29 11:21:40 Rare disease Orphan drug Public health Methadone European Union Rare Disease Day Genetic Alliance UK Health Health economics European Organization for Rare Diseases
23	Dear [insert name of parliamentary candidate], Pledge for Patients: Please show your support for patients affected by rare, genetic and undiagnosed conditions I am/We are writing to you as the [Labour/Conservative/Li Add to Reading List Source URL: www.raredisease.org.uk Language: English - Date: 2015-03-19 13:37:45 Health Rare diseases Genetic Alliance UK
24	STATEMENT ON THE EP REPORT ON THE PROTECTION OF PERSONAL DATA On behalf of the European rare disease community at large, we hereby express our deep concern on the Draft Report, released on 16 January 2013, by Jan Philipp Add to Reading List Source URL: www.publichealth.ox.ac.uk Language: English - Date: 2013-08-01 07:41:46 Public health Orphan drug Public health genomics Genetic Alliance UK Health Health economics Rare disease
25	STATEMENT ON THE EP REPORT ON THE PROTECTION OF PERSONAL DATA On behalf of the European rare disease community at large, we hereby express our deep concern on the Draft Report, released on 16 January 2013, by Jan Philipp Add to Reading List Source URL: www.dph.ox.ac.uk Language: English - Date: 2013-08-01 07:41:46 Public health Orphan drug Public health genomics Genetic Alliance UK Health Health economics Rare disease
26	Empyema Management in Paediatrics Add to Reading List Source URL: www.apsu.org.au Language: English - Date: 2012-12-26 17:58:01 Healthcare Epidemiology Orphan drug Amyotrophic lateral sclerosis Health care provider Health care Rare Disease Day Genetic Alliance UK Health Medicine Rare diseases
27	Genetic Alliance Australia (formerly known as ASSOCIATION OF GENETIC SUPPORT OF AUSTRALASIA (AGSA)) Funded by NSW Health & FACS\| Reg Charity No.CFN15481 / ACN168[removed], C/- Garvan Institute of Medical Research, L6, 38 Add to Reading List Source URL: www.apsu.org.au Language: English - Date: 2015-02-25 19:14:33 Klinefelter Garvan Institute of Medical Research Darlinghurst New South Wales Westmead Hospital New South Wales Suburbs of Sydney Health
28	World Rare Disease Day 28 February 2011 World Rare Disease Day is a global event held annually on the last day of February. Its main objective is to raise awareness of rare diseases and their impact on not only the kids Add to Reading List Source URL: www.awch.org.au Language: English - Date: 2014-01-18 05:49:10 Medicine Lipid storage disorders Rare Disease Day European Organization for Rare Diseases Fabry disease Orphan drug Disease Genetic Alliance UK Health Epidemiology Rare diseases
29	Microsoft Word - Rare diseases National Plan-Final Draft19-01-10 Add to Reading List Source URL: www.apsu.org.au Language: English - Date: 2012-12-26 19:58:00 Rare diseases Epidemiology Health care Chronic Genetic Alliance UK Rare Disease Day Health Medicine National Institutes of Health
30	Gala_2015_layout_Final_sm.indd Add to Reading List Source URL: www.raredisorders.ca Language: English - Date: 2015-03-18 11:02:33 Medical terms Rare disease Canadian Organization for Rare Disorders Disease Rare Disease Day Genetic Alliance UK Epidemiology Health Medicine

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