article thumbnailThe Oireachtas Joint Committee on Health met on July 12th to discuss the process for the review and approval of Orphan Drugs.  The Alpha One Foundation represented approximately 60 Alpha-1 patients, at the meeting, 21 of whom are currently receiving a drug called Respreeza on a “Compassionate Use” basis and approximately 40 more...
Would you like to become a Patient Expert?
Thursday, June 22nd 2017 16:01
article thumbnailWant to get EDUCATED? Want to get INVOLVED? The IPPOSI Patient Education Programme is now open for applications. This is a 6-month blended-learning education programme, the first of its kind in Ireland, and is being piloted from September 2017 to March 2018 with a number of topics related to healthcare and the development...
article thumbnailThe Alpha-1 Action Group are holding a protest at the gates of Dáil Éireann, Kildare Street, Dublin 2 tomorrow Wednesday, May 31st at 12.30pm. The protest is to urge the Government to fund the life-changing Respreeza therapy as soon as possible. Calling on all those affected by Alpha-1, their families, and friends to...
article thumbnailThe Alpha-1 Action Group are holding a protest at the gates of Dáil Éireann, Kildare Street, Dublin 2 on Wednesday May 31st at 12.30pm.  The protest is to urge the Government to fund the life-changing Respreeza therapy as soon as possible.  Calling on all those affected by Alpha-1, their families, and friends to attend on the...
article thumbnailA baby with Alpha-1 who desperately needed a liver transplant found the perfect match when his godmother came through with the lifesaving gift. Eight-month-old Finn O’Sullivan has both Alpha-1 and biliary atresia, a rare disease of the liver and bile ducts that occurs in infants. Getting Finn a new liver was “exceedingly...
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.