All resources on this page are available for your use in English and are grouped into the following categories: Education, Healthcare Providers, Research and Advocacy. You may download a copy and print them at your pleasure.
Resources which are available in other languages are made available on each Country Page. These Country Pages will provide local access to care, contact, resources and general information; please click on your country flag at the bottom of this page.
Educational
The following link offers a list of books about Alpha-1 Antitrypsin Deficiency Disorder; recommend by the Alpha-1 Foundation (USA): Bibliography
ALPHA-1 Advocacy Pathway
Alpha-1 Global has developed an interactive platform which will assist anyone through the process of understanding advocacy and considerations in becoming an Alpha-1 Advocate. The Alpha-1 ADVOCACY Pathway offers an engaging, self-guided, online discovery experience and offers training modules for five types of advocacy involvement.
Discover which advocacy type is best for you by visiting the Alpha-1 ADVOCACY Pathway. Alpha-1 Global is currently developing an updated pathway system that will be unveiled in Spring 2021.
ALPHA-1 AWARENESS INFOGRAPHIC
This Alpha-1 awareness infographic was developed by experts and it aims to help spreading awareness and knowledge about the condition, including sign and symptoms, testing for Alpha-1, continuous monitoring and follow-ups, key facts and next steps. This document can be downloaded and shared with anyone for a better understanding of Alpha-1 Antitrypsin Deficiency. No changes to the content is permitted.
Disclaimer: The Infographic is approved for EU use only. Should you want to adapt or use the infographic outside the EU, please contact Randel Plant at rplant@alpha1.org.
This infographic is available in the following languages: Danish, Dutch, French, German, Greek, Italian, Polish, Swedish
ALPHA-1 Social Media Toolkit 2020
This toolkit was created in conjunction with European Alpha-1 Awareness Day 2020 and serves as a guide for communications about Alpha-1. It emphasises the importance of the use of social media, and includes practical examples of how to plan, conduct, and track a successful social media campaign.
2019 Alpha-1 Advocacy Webinar Presentation & Checklist
Alpha-1 Global, in collaboration with RPP Group, hosted a webinar focused on improving Alpha-1 advocacy efforts in the European Union. The presentation focused on empowering Alpha-1 patient organisations and patients to become advocates at the national and European level. The webinar guided the participants through the advocacy process, which is outlined in a checklist. The webinar also provided helpful insights into how to develop a successful political ask, how to identify political stakeholders with similar interests, and tips on organising an activity for EU Alpha-1 Awareness Day 2020, which will take place on 25 April.
This checklist, entitled the Alpha-1 National Advocacy Checklist, is based on The Alpha-1 Advocacy Pathway tool. The Alpha-1 National Advocacy Checklist outlines a four-step process to successfully identify and deliver messages to key stakeholders.
ALPHA-1 GLOBAL TOOLKIT
A special Alpha-1 Advocacy Toolkit is developed to help mobilize Alpha-1 communities in their efforts to improve access to care, including augmentation therapy. This document aims to assist you to build a successful advocacy strategy, including tools to engage and educate decision makers in your country or region. Alpha-1 leaders must decide which recommendations are relevant given the political, social and cultural context in their particular country, and adapt the information for use in their own language and situation.
The toolkit is available in English, French, German, Italian, Portuguese, Romanian, and Spanish.