article thumbnailFindings from CSL Behring's RAPID study have demonstrated the effectiveness of augmentation therapy in slowing emphysema due to Alpha-1 antitrypsin deficiency (AATD). CSL Behring, a global biopharmaceutical company sponsored the study in which 180 severely deficient Alpha-1 patients were randomly assigned to receive...
article thumbnailAs a follow on from the 2014 study 'Web Information for Families of Children with Rare Diseases' The Saoirse Foundation is pleased to announce an addition to the proposed website of parents of children with rare conditions. The addition is the development of the website's parent to parent support, a recommendation from...
National Rare Disease Office Opens in Dublin
Friday, June 5th 2015 14:02
article thumbnailThe new National Rare Disease Office was officially opened by Minister for Health Leo Varadkar, T.D. in the Mater Hospital in Dublin yesterday, June 4th. The principal functions of the National Rare Diseases Office (NRDO) will include: •    development of a database of expertise in rare diseases •    setting up a helpline...
Public and Patient Involvement (PPI) in Research
Wednesday, June 3rd 2015 13:16
article thumbnailA recent meeting in Dublin in November 2014 highlighted the area of public and patient involvement in research (known as PPI).  PPI describes a variety of ways that researchers can engage with people for whom their research is relevant. It also plays an important role in ensuring that patients are informed about research...
VHI Women's Mini Marathon next Monday June 1st
Thursday, May 28th 2015 14:19
article thumbnailThere are just four days to go until the VHI Women's Mini Marathon which takes place next bank holiday Monday, June 1st at 2pm. As ever we encourage ladies to take part to raise funds and increase awareness for the Alpha One Foundation. For all those who are registered and taking part next Monday we are planning to meet...
What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.
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