Raising awareness around Alpha-1 Antitrypsin Deficiency
Recently, we worked with PAGs in the AATD community on a campaign to increase disease awareness and encourage testing.
One of the biggest obstacles with rare diseases is a lack of awareness. This often leads to a delay in diagnosis, and therefore a delay in – or lack of – appropriate treatment. We believe not only in the importance of treatment, but also the importance of awareness. This is why we are committed to working closely with patient activation groups (PAGs), raising awareness within the rare disease community. Most recently, we partnered with PAGs in the Alpha-1 Antitrypsin Deficiency (AATD) community.
It is estimated that over 250 million people around the world suffer from Chronic Obstructive Pulmonary Disease (COPD). It can cause breathlessness during exercise, a long-lasting cough with excessive phlegm, wheezing and repeated chest infections. COPD is often caused by factors like age or smoking, but one of the lesser-known causes is a rare, genetic disease, AATD. However, a lack of awareness – in patients and healthcare professionals – and therefore a lack of testing for AATD can often result in misdiagnosis.
But tests do exist. And, in fact, experts have recommended that all people diagnosed with COPD should be tested for AATD, to rule it out as a possibility. Our Alpha-1 campaign engaged potential patients across the UK, Poland, Belgium, Sweden and Denmark, through digital marketing and various local activations. Testing and early diagnosis can not only help those suffering manage the condition and reduce the risk of progression but can also help other family members understand their risk.
For the campaign, we built a dedicated microsite – www.WhatIsAlpha-1.com – as a hub of information and advice for those who could benefit from taking a test for AATD.