Last August Anne Gormley from Ramelton in Co. Donegal was interviewed on the popular Shaun Doherty Show on local station Highland Radio to talk about her diagnosis of COPD and Alpha-1.  Anne spoke powerfully and bravely about how difficult day to day tasks are when every breath is a struggle.  

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This week is Organ Donor Awareness Week 2016 which runs from April 2nd to 9th.  There are approximately 700 people in Ireland awaiting life-saving heart, lung, liver, kidney and pancreas transplants. Thanks to the gift of organ donation over 3,000 people in Ireland have been given a new lease of life.  

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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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