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General Information Alpha-1 Websites Alpha-1 Association (USA) Informative website with excellent information in plain English and downloadable resources for the newly-diagnosed Alpha. Alpha-1 Foundation (USA) Link to the US Alpha-1 patient website, very useful and informative. What is Alpha-1 Antitrypsin Deficiency? (USA) Link to a good overview of Alpha -1 by the National Heart and Lung Institute (USA). AlphaNet (USA) US website provided and maintained by Alpha-1 patients for Alpha-1 patients.
Alpha-1 Awareness (UK) Patient website maintained by the UK Alpha-1 Awareness Group.
Alpha-1 Kids (USA) Very helpful website for parents of newly diagnosed children with Alpha-1.
Children with Alpha-1 Antitrypsin Deficiency Liver Disease Stories from families with children diagnosed with the liver disease caused by Alpha-1.
University of Florida Alpha-1 program A link to the University of Florida Alpha-1 program which describes the many screening and research initiatives.
BBC Health Alpha-1 Antitrypsin Deficiency Excellent website, easy to understand, and very informative.
Alpha One Foundation Suite Opening Link to the Department of Health and Children website and to the Minister’s speech at the opening of the Alpha One Suite in Beaumont Hospital, April 2004.
Lab Tests Online Information about Alpha-1 and how it is diagnosed.
Smoking Cessation Websites Quit.ie Excellent website on all aspects of quitting smoking.Action on Smoking and Health (ASH) ASH Ireland is focused on reducing the impact of tobacco use in Irish Society. www.thetribe.ie ASH Ireland website specifically designed to meet the needs of young people. This site highlights the many health, environmental and addiction issues associated with smoking. Give Up Smoking HSE website dedicated to smoking cessation.
Office of Tobacco Control The control and regulation of tobacco products.
Patient Groups, Charities, and Health Professional Websites Irish Lung Health Alliance Group of 11 Irish charities representing lung conditions which promotes the importance of lung health. Living with COPD Website describing COPD, what it is, how it is diagnosed and treated, available supports and simple steps to ease symptoms and improve quality of life. COPD – It’s breathtaking More information about COPD symptoms and diagnosis. COPD Support Group Detailed Irish website about COPD maintained by a COPD patient Michael McGloin. Mayo COPD Support Group Informative website for Mayo COPD sufferers. Respiratory Nurses Association of Ireland Website of the Respiratory Nurses Association of Ireland.
Asthma Society of Ireland Website for the Asthma Society of Ireland.
Medical Research Charities Group Website of the Medical Research Charities Group, an umbrella group of medical research and patient support charities.
Irish Platform for Patients’ Organisations, Science, and Industry (IPPOSI)
Website of the Irish Platform for Patients’ Organisations, Science, and Industry, which seeks to foster close links between Patients, Clinicians, Academic Scientists, Industry, Regulators, Policy Makers, and is recognised by the Department of Health.
Genetic and Rare Disorders Organisation (GRDO)
The Genetic and Rare Disorders Organisation (GRDO) is a non-governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.
Institute of Public Health in Ireland (IPH)
The Institute of Public Health in Ireland (IPH) promotes cooperation for public health between Northern Ireland and the Republic of Ireland. IPH was established in 1998 and has offices in Belfast and Dublin.
European Organisation for Rare Diseases (EURORDIS)
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. European Lung Foundation A Eurpoean site with the aim of bringing together patients, the public and respiratory professionals to positively influence respiratory medicine. EuroplanIreland A joint action for National Strategies and Plans for Rare Diseases in all EU Member states The main goal is to establish a national stratagy for rare diseases withing each member state.
Health Service Executive The Health Service Executive (HSE) is responsible for providing Health and Personal Social Services for everyone living in the Republic of Ireland.
Articles on Alpha-1 in National and Local Media Irish Times Interview with Alpha-1 Patient in April 2009
Excellent interview with Alpha-1 patient about her condition and the positive outlook she maintains.
Irish Medical Times Alpha-1 Article on Alpha-1 Awareness
Article on Alpha-1 and the low awareness of the condition among GPs.
Derry Journal Alpha-1 Patient Interview
Link to Derry Journal newspaper article about an Alpha-1 patient John Hannan and his horse-ride from Mizen Head to Malin Head to raise awareness about the condition.
Genetics and Medicine Educational Websites
http://www.dnaftb.org/dnaftb/
This is an animated site describing the basics of DNA, genes, and heredity. Key concepts of genetics are explained using animation, image galleries and video interviews. Kept at a basic level but impressively done nonetheless.
http://www.innerbody.com/
Educational site detailing the anatomy of the human body.
http://www.chg.duke.edu/education/glossary.html#inherited
Excellent website from Duke University with simple explanations for common genetic words and phrases.
Oxygen products Air Products
Information on oxygen supplier information and contact details for tourists in Ireland and people travelling overseas. |