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Editorial
. 2021 Mar;17(1):200340.
doi: 10.1183/20734735.0340-2020.

The patient perspective of alpha-1 antitrypsin deficiency: disease burden and unmet needs

Marion Wilkens  1 , Michael Bartlett  2 , Frank Willersinn  3 , Karen O'Hara  4 , Jeanette Boyd  5 , Jessica Denning  5
Affiliations
Editorial

The patient perspective of alpha-1 antitrypsin deficiency: disease burden and unmet needs

Marion Wilkens et al. Breathe (Sheff). 2021 Mar.

Abstract

Three people with alpha-1 antitrypsin deficiency (AATD) share their experiences of living with this rare, genetic condition. They reflect on living with AATD and its impact on their lives including inequality of access to treatment across Europe. https://bit.ly/3rrYS9s.

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Conflict of interest statement

Conflict of interest: M. Wilkens as chairman of the patient organisation Alpha1 Deutschland e.V. does not receive any donations, but the organisation receives money from public funds as well as from the pharmaceutical industry. For example, grants as well as travelling costs. Conflict of interest: K. O'Hara reports non-financial support from ELF/ERS, non-financial support from Mereo BioPharma Group PLC, the Alpha-1 UK Support Group has received grants from CSL Behring and also receives donations from individuals/companies as a result of fundraising activities, personal fees and non-financial support from NICE, non-financial support from Alpha-1 Global, outside the submitted work. Conflict of interest: J. Boyd is an employee of the European Lung Foundation. Conflict of interest: J. Denning is an employee of the European Lung Foundation.

Figures

Figure 1
Figure 1
Marion Wilkens.
Figure 2
Figure 2
Michael Bartlett.
Figure 3
Figure 3
Frank Willersinn.
See this image and copyright information in PMC

References

    1. American Thoracic Society , European Respiratory Society . American Thoracic Society/European Respiratory Society statement: standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. Am J Respir Crit Care Med 2003; 168: 818–900. doi:10.1164/rccm.168.7.818 - DOI - PubMed

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