Useful Links

June 24, 2014 Alpha1 Admin Comments Off

Alpha-1 Websites

Alpha-1 Foundation (USA) Informative website with excellent information in plain English and downloadable resources for newly-diagnosed Alphas. 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. European Lung Foundation Alpha-1 Factsheet An informative and clear explanation of Alpha-1 compiled by the European Lung Foundation 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 for Health’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.

Patient Groups, Charities, and Health Professional Websites

HSE COPD Guide Article on the Health Service Executive website describing COPD and its effects. Irish Lung Health Alliance Umbrella group of Irish charities representing lung conditions which promotes the importance of lung health. Irish Thoracic Society The official society for healthcare professionals involved in the care of people with chronic or acute respiratory disease in Ireland. COPD Support Ireland Website of the national COPD charity which describes COPD, what it is, how it is diagnosed and treated, available supports and simple steps to ease symptoms and improve quality of life.  COPD Support Group Detailed website maintained by the Benbulben COPD group and COPD patient Michael McGloin. Anáil The society for respiratory nurses in 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. Rare Diseases Ireland Formerly known as the Genetic and Rare Disorders Organisation (GRDO) Rare Disease Ireland 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 European 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. Orphanet This is the Irish website of a larger European Union funded web portal which describes and classifies rare diseases. It is also a directory of services for those with rare diseases: clinics, laboratories, research projects, registries, clinical trials, and patient organisations.

Articles on Alpha-1 in National and Local Media

Science Changes Lives: Medical trial is saving me from illness that took my two sisters  Article on in which an Alpha-1 patient discusses taking part in a clinical trial. September 2014. Researchers from the Alpha One Foundation Make Lung Health Breakthrough Irish research showing for the first time the clear risk of lung disease in MZ individuals who smoke.  With over 250,000 people in Ireland carrying 1 defective Alpha-1 gene (called Z), this study shows that smokers in this group have a higher risk of COPD.  Ever heard of Alpha-1 deficiency? Here’s why you might want to get tested Article on on Alpha-1. January 2014 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 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 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. Educational site detailing the anatomy of the human body. Excellent website from Duke University with simple explanations for common genetic words and phrases. Excellent website hosted by IPPOSI which explains in simple language what a clinical trial is and why they are carried out.

Smoking Cessation Websites 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. 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. 

Oxygen products

Air Products Information on oxygen supplier information and contact details for tourists in Ireland and people travelling overseas.