Tell us your priorities for living with Alpha-1 and how you are cared for and treated

We are asking people with Alpha-1 Antitrypsin Deficiency (AATD) and their families and friends to tell us about the challenges of care, treatment and living with AATD.

This survey has been developed as part of the work led by EARCO (European Alpha-1 Research Collaboration), a Clinical Research Collaboration of the European Respiratory Society that helps experts in Alpha-1 come together to investigate this disease. Your survey answers will influence what research is done by research centres in the future.

The survey is open to people diagnosed with AATD as well as parents, relatives and caregivers of people with AATD. It is available to take in English, Dutch, French, German, Italian, Polish, Portuguese, Serbian and Spanish. The survey will be open until 8 December 2019.

As AATD is a rare disease, please help us to share this survey as widely as possible. You can share the survey on Twitter, or by emailing a link to this page to your contacts.

Read our factsheet on Alpha-1
Visit the EARCO website