Organisation

Alpha-1 Foundation Ireland was founded in 2001 and is based in the RCSI Education and Research Centre at Beaumont Hospital. 

Vision  

That every Alpha-1 individual in Ireland is diagnosed and receives specialist care and treatment in a timely fashion.

Mission Statement 

Alpha-1 Foundation Ireland is dedicated to raising awareness, increasing diagnosis, promoting research, and improving the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1).

Background

Alpha-1 Foundation Ireland was founded to raise awareness, increase diagnosis, promote research, and improve the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1).

Alpha-1 is a genetic condition that can cause severe lung and liver problems. It is one of the most common inherited conditions in Ireland but unfortunately Alpha-1 is hugely under-diagnosed. For example, the typical person with Alpha-1 sees up to 5 doctors for a period of 7 years before a correct diagnosis is reached. Alpha-1 affects approximately 250,000 people on the island of Ireland, with 3,000 of these affected by severe deficiency (The Prevalence of Alpha-1 Antitrypsin Deficiency in Ireland, Respiratory Research, 2011 July 13;12:91). People with Alpha-1 sometimes present in their 40s and 50s with early-onset emphysema or chronic obstructive pulmonary disease (COPD) but lung disease can also occur later in life. A sub-group of people with severe Alpha-1 (usually ZZ) present with liver disease in the first year of life and in rare cases may require liver transplantation. Early diagnosis is vital to the health and welfare of people with Alpha-1, and this is our main objective.  

Alpha-1 Foundation Ireland works closely with Health Research Charities Ireland (HRCI), the Irish Platform for Patient Organisations, Science, and Industry (IPPOSI), the Irish Donor Network, the Asthma Society, COPD Support Ireland and several other organisations dedicated to improving lung and liver health.  We support our active Alpha-1 patient support group which promotes understanding and awareness of the condition among patients and their families, as well as providing much needed peer-to-peer support for newly-diagnosed Alphas. 

Our main aims include:

• Increasing awareness of Alpha-1 Antitrypsin Deficiency (Alpha-1), amongst both the medical profession and the general public.
• Promoting early diagnosis of Alpha-1 individuals.
• Providing comprehensive patient support.
• Access to clinical trials for emerging therapies.

National Alpha-1 Screening Programme:

In 2004 we began a national screening programme funded by the Department of Health and Children to reduce the under diagnosis and misdiagnosis of Alpha-1. This targeted detection programme is the only national screening programme for Alpha-1 in the world. We follow World Health Organisation (WHO), American Thoracic Society (ATS), and European Respiratory Society (ERS) guidelines which together recommend testing of:

• All chronic obstructive pulmonary disease (COPD) patients
• All non-responsive asthmatics
• All cryptogenic liver disease patients
• All first-degree relatives of known Alphas
• Individuals with reduced serum levels of AAT
• Panniculitis patients

There is a dedicated Alpha-1 clinic under the care of Professor McElvaney in Beaumont Hospital every Wednesday afternoon. The staff of the Alpha-1 Foundation use the latest diagnostic methods in our screening programme, perform research in the area of Alpha-1, coordinate clinical trials testing new therapies, and strive to increase awareness of the condition throughout Ireland. Staff members liaise with the Alpha-1 clinic team, as well as patients, GPs, hospital laboratory staff, and respiratory and liver specialists throughout Ireland. 

As Alpha-1 is a hereditary condition we strongly recommend that first degree family members of people diagnosed with Alpha-1 should be tested as relatives may also be affected and at risk of lung or liver disease. 

Staff of Alpha-1 Foundation Ireland:

• Anne Marie O’Dowd, CEO
• Dr. Tomás Carroll, chief scientist (Senior Lecturer, RCSI)
• Ronan Heeney, medical scientist
• Rosaleen Carroll, Alpha-1 nurse specialist

Board of Alpha-1 Foundation Ireland:

• Professor Shane O’Neill (Chairperson)
• Michelle Hughes (person living with Alpha-1)
• Kathryn Fenlon (Secretary)
• Professor Gerry McElvaney

Patron of Alpha-1 Foundation Ireland:

President of Ireland Michael D. Higgins. 

Contact Us:

Please contact us with any queries on 01-8093871 or email alpha1@rcsi.ie.