Alpha-1 Europe Alliance: The voice of Alpha-1 patient organisations in Europe

Various national Alpha-1 patient organisations across Europe came together under one Alliance to unify the voice of the Alpha-1 patient community.  The stakeholders involved seek to advocate for improved diagnosis and care by raising awareness, promoting research, and empowering each national organisation. The Alpha-1 Europe Alliance provides a home for these discussions and solidarity in the approach to improving the experience of living with Alpha-1 in Europe.

The idea was born during the COVID-19 pandemic. As is the case with a rare disease like Alpha-1 Antitrypsin Deficiency (AATD), it is necessary to learn from the experiences of others and share information across countries. Officials, for example, did not share any figures on the impact of the pandemic on Alpha-1 patients, nor did they share to what extent this subset of the population was at risk of increased complications. So, the leaders of European Alpha-1 patient organisations decided to meet monthly to exchange ideas and share experiences.

These monthly meetings began to be used to fill other informational needs in the community, such as the exchange of the latest updates related to research and science. For example, through these meetings, patient organisations were briefed on initiatives from European committees, such as EARCO and ERNs, and received information to support the execution of European-wide surveys and studies. The organisations invited expert speakers and offered support, which was only possible given the newly formed close collaboration.

From the concept of the monthly meeting, it was a natural leap to establish an official organisation to continue and broaden the scope of this collaboration in a more formalised manner.