Find-a1
First Identify, Next Diagnose Alpha-1 antitrypsin deficiency
The FIND-A1 project is designed to engage patients, doctors, nurses and other medical healthcare providers in the detection of the many Alpha-1 antitrypsin deficient patients who are currently not diagnosed or who are diagnosed as having some other condition.
Less than ten percent of Alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition. Many of the undiagnosed patients have been told that their complaint is asthma, bronchitis, bronchiectasis or some other pulmonary condition. These conditions may be present and may confuse the clinical picture making accurate diagnosis difficult. However, correct diagnosis is important in that it leads on to the most appropriate treatment, also the genetic nature of the condition can be explained to close family members.
The tools that the FIND-A1 project will use are:
Network products being developed
- Guidelines, Consensus papers
- Letters to GPs
- Nursing standards
- Patient education
Targeting of the general population
- Press conferences
- TV
- Internet
- Schools
Medical support
- Symposia
- Consultations with specialist and researchers
Anyone with an interest in contributing to FIND-A1 is invited to contact info@find-a1.org.