Alpha-1 antitrypsin deficiency, also known as A1AT or AATD, is a genetic condition which results in a lack of the alpha-1 antitrypsin (AAT) protein in the blood. AAT is produced by the liver and serves to protect both the liver and the lungs. A lack of the AAT protein can lead to emphysema and other serious lung and liver disease.
Alpha-1 Alliance has now launched its website. The website will provide you with information about the Alliance’s campaign for better Alpha-1 services and will also keep you up-to-date on the progress of the Alliance’s activities and events.
Please visit: www.alpha-1-alliance.org.uk to view the website.
The Alpha-1 Alliance will be holding an event in Parliament in December to raise awareness with MPs about the unmet medical need of Alpha-1 patients and to launch a policy report, which includes recommendations for better access to Alpha-1 services and therapies.
We want as many MPs as possible to attend the event and we need your help to make the event a success!
The new website of the Alliance includes a function which allows you to identity your MP and to send him/her a personalised letter inviting your MP to attend the Parliamentary event. You only have to follow 2 simple steps.
- 1. Click on Get Involved on the Alliance’s website and enter your postcode
- 2. Review the template letter and add your personal experience of living with Alpha-1 then click Send Letter.
The MP will then respond to the Alpha-1 Alliance’s Secretariat to let the Alliance know whether or not he/she will be able to attend the event on your behalf.
We would be extremely grateful if you could support the campaign and send the letter to your MP using the steps above.
The AlphaKit Quickscreen device was announced at the European Respiratory Society 2013 Congress in Barcelona.
The device is a quick way for physicians and healthcare providers to screen patients with COPD for Alpha-1. The Quickscreen requires a few drops of blood to detect the presence of the Z protein that is responsible for most severe Alpha-1 cases. The result is available within 15 minutes. It is anticipated that the kit will be available in several European countries in early 2014.
“It typically takes seven years and more than four physicians before the AAT deficiency diagnosis is made,” says Marc Miravitlles, MD, chest physician and senior researcher at the Hospital Vall d’Hebron in Barcelona. “By this point, the patients are symptomatic, and it is apparent that they may not have normal or usual COPD.”
The testing device was developed by scientists working for Grifols. Our patron Professor Sabina Janciauskiene was instrumental in developing the biochemistry behind this new rapid and cheap way of diagnosing the presence of the Z allele. More
MAKE A DONATION
A very easy way to support the work of the charity is to text ALFA11 £10 to 70070 to donate to Alpha 1 Awareness UK from your mobile phone. JustTextGiving by Vodafone.
This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.