Information

“Alpha1-Antitrypsin Deficiency” on e-Medicine – e-Medicine sponsored by Medscape, is a reliable source of information. Articles are reviewed by experts and regularly updated. This is a recent article (2009) by Paul Fairman, MD and Rajiv Malhotra, DO, both from the Virginia Commonwealth University Health System in the USA.

Genetics Home Reference – An excellent source of background information, this site is sponsored by the U.S. National Library of Medicine.

The Australian and New Zealand COPD Reference Centre – Sponsored by the Australian Lung Foundation and the Thoracic Society of Australia/New Zealand, this site is has a lot of valuable information to help patients and families with COPD. Well worth a visit.

Support

Alpha-1 Foundation – The Alpha-1 Foundation is a not-for-profit organisation founded individuals diagnosed with Alpha-1. The Foundation is dedicated to providing leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1. The majority of the Board of Directors are either diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1. They produce a magazine (available with membership), and have educational brochures available online. A very good site.

The Alpha-1 Association – A non-profit organisation based in the USA dedicated to improving the quality of life for those affected by Alpha-1. Good source of background information, including updates on latest research.

Alpha-1 Kids – For families and their children affected by alpha-1 deficiency. This organisation produces a newsletter and magazine and hold yearly conferences, including teleconferences. Worth a visit.

Asthma and Respiratory Foundation (NZ) – A non-profit organisation that aims to raise awareness of respiratory illnesses. They have sections on COPD that describe alpha-1 antitrypsin deficiency.

British Lung Foundation – This UK support organisation provides information on many lung diseases, including Alpha-1.

MAGIC - The Manukau Airways Group Inspiring Confidence – Auckland support group for anyone who has COPD, emphysema, asthma, etc. This group meets on the last Wednesday of the month, 10.15am–noon at Manurewa RSA, Maich Rd. Speakers, light exercises and morning tea. Cost is $4. Ph: Janet (09) 262 4453 or John (09) 292 7652 or (09) 276 0044 ext 8874.

Clinical Trials

Australia New Zealand Clinical Trial Registry – A searchable database of Australia/New Zealand clinical trials.

ClinicalTrials.gov – Sponsored by the USA National Institutes of Health, this site provides background information to learn more about clinical trials and a listing of trials that are available.