A new European project called EUPATI is trying to collect the real life experiences of patients who have participated in medicines development and clinical trials. People with Alpha-1 who have participated in clinical trials are encouraged to take part by the deadline of April 11th.
The first step of the EUPATI project is to develop an online learning course on medicines development which will educate 100 patient advocates to expert level (to apply visit http://goo.gl/nDNkCK before April 20th 2014). For this course EUPATI are looking for real life stories from patient advocates that have been involved in medicines research & development. The stories can be used to educate fellow patient advocates who are training to become patient experts in the medicines development process. They will also provide other patient advocates with the insights of their peers so that when they go out and actively participate in different ways they have a practical idea of what to expect, to do and not to do. Your story will be of great value in making meaningful patient involvement in the medicines development a gold standard of the future.
To share your experience an online survey has been set up. Click here if you are willing to share your story. The deadline for sharing your experience is April 11th 2014.
For more information on the EUPATI project click here.
Info Centre
WhatisAlpha-1Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test.
WhatisAlpha-1AntitrypsinDeficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
HowDoIGetTested?
The Alpha-1 Foundation Ireland provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. It is a simple blood test. For more details ring 01-8093871 or email alpha1@rcsi.ie
Do you want to share your experience of participating in a clinical trial?
A new European project called EUPATI is trying to collect the real life experiences of patients who have participated in medicines development and clinical trials. People with Alpha-1 who have participated in clinical trials are encouraged to take part by the deadline of April 11th.
The first step of the EUPATI project is to develop an online learning course on medicines development which will educate 100 patient advocates to expert level (to apply visit http://goo.gl/nDNkCK before April 20th 2014). For this course EUPATI are looking for real life stories from patient advocates that have been involved in medicines research & development. The stories can be used to educate fellow patient advocates who are training to become patient experts in the medicines development process. They will also provide other patient advocates with the insights of their peers so that when they go out and actively participate in different ways they have a practical idea of what to expect, to do and not to do. Your story will be of great value in making meaningful patient involvement in the medicines development a gold standard of the future.
To share your experience an online survey has been set up. Click here if you are willing to share your story. The deadline for sharing your experience is April 11th 2014.
For more information on the EUPATI project click here.
Info Centre
What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test.
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha-1 Foundation Ireland provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. It is a simple blood test. For more details ring 01-8093871 or email alpha1@rcsi.ie