Have you been diagnosed with alpha-1 antitrypsin deficiency (Alpha-1) recently?  Have you discussed this information with your family?  If you have been diagnosed with Alpha-1 other members of your family could also have this genetic condition. This is because Alpha-1 is caused by genes we inherit from our parents.

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The National Rare Diseases Office (NRDO) was established in June 2015 by the Health Services Executive (HSE).  It is staffed by information scientists who have significant experience working with individuals and families affected by rare disorders.  The NRDO is based at the Mater Misericordiae University Hospital in Dublin 7. 

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January 27th marked the launch of the EUPATI Toolbox on Medicines R&D – a massive online resource of over 3000 articles, factsheets, slides, infographics, webinars and videos on topics related to medicines research and development, including how patients can be involved throughout this process.  Discover this important new EUPATI Toolbox here.

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COPD Support Ireland is a charity set up in 2013 to support all those living with a lung condition called chronic obstructive pulmonary disease (COPD).  COPD  is a term used to include chronic bronchitis, emphysema or a combination of both conditions.

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