We attended the 7th Alpha-1 Global Patient Congress in Dubrovnik, Croatia, at the beginning of April and met with many individuals from Alpha-1 support groups around the world, learning more about both the individual and wider healthcare challenges faced in different countries, particularly around access to augmentation therapy – the main plasma-based therapy for this rare disease, which is not available, funded or reimbursed in all countries. Alpha-1 antitrypsin deficiency (AATD) is a rare, genetic disease. Read more about it in our ELF Factsheet.
A talk by Carina Schey from the University of Groningen on her current research into the burden of Alpha-1 highlighted the need to emphasis the budgetary benefits of treating the condition to build an argument for funding, e.g. fewer severe exacerbations means less acute healthcare is required, less need for social services and more likely that carers and patients are able to remain in employment, so benefiting the whole economy. Her research, when published, should help the Alpha-1 community with building this argument.
There were also talks from medical professionals and researchers in the field about why more research is needed on the wide variation of symptoms and impact of this condition on patients, potential impact of environmental factors and the need for earlier diagnosis of this rare disease, which is often only diagnosed later in life following a diagnosis of COPD. If diagnosed at an earlier stage, Alpha-1 could be treated and self-managed more effectively.
Inspiring talks on patient engagement in research and the potential for digital healthcare to improve patient education and self-care support, as well as the need to attract young people to the Alpha-1 network groups, were included. Two young Alpha-1 ambassadors were interviewed about their experiences as a patient and carer, and they felt that wider use of social media could help with building a community to reach out, gain ideas and spread the message more widely, particularly to younger patients.
Alpha-1 Global is a project of Alpha-1 Foundation – visit their website.
ELF supports involvement of Alpha-1 patient representatives in the ERS EARCO Clinical Research Collaboration for alpha-1 antitrypsin deficiency (AATD) – read more in ERJ editorial.
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