2020 European Alpha-1 Awareness Day
25 April 2020 will mark the third annual European Alpha-1 Awareness Day, which is dedicated to raising awareness for those with Alpha-1 Antitrypsin Deficiency.
Alpha-1 Antitrypsin Deficiency (AATD) is an inherited condition that increases the risk of lung, liver and other diseases. Alpha-1 is present worldwide, with the prevalence of its severe form varying across Europe and affecting about 1 in 1,500 to 3,500 individuals. Mild forms are much more common.
The principal difficulty in managing Alpha-1 is achieving early diagnosis, something which most patients will not receive until severe symptoms have begun, despite the effective means of diagnosis that exist. Many times, the symptoms of Chronic Obstructive Pulmonary disease (COPD) and liver disease does not lead to the appropriate diagnosis of Alpha-1. This challenge requires a consolidated approach of educated healthcare professionals and patients.
The purpose of this Awareness Day is to provide information on this genetic condition in order to achieve increased rates of diagnosis and detection, and ultimately achieve greater access to treatment for those affected by AATD. A social media campaign has been devised to provide information in four key areas that Alpha-1 Global has identified as pertinent to the improved well-being of European Alphas. This social media plan has been designed with the aim to deliver key messages regarding the areas we have identified as priorities in the month leading up to the
Alpha-1 Awareness Day.
The four key areas for improvement on which these messages are based are:
- European Reference Networks
- Improved diagnosis
- Access to treatment
- A holistic approach to improving the situation of Alpha-1 patients
These four areas of improvement are derived from the Alpha-1 European Expert Group Recommendations, which is a document that was created to raise awareness among governments, health systems, health professionals and society in general about the importance of diagnosing, treating and investigating Alpha-1 Antitrypsin Deficiency. The recommendations is available in 10 languages, and can be viewed here.
Alpha-1 Global will post 3-4 times a week on Facebook and Twitter. Posts will be made on the following accounts:
- Facebook- Alpha-1 Global
- Twitter- @Alpha1_EPevent (This is the European Alpha-1 Awareness Day Account)
Alpha-1 Global will be using the hashtags #ShareKnowledgeShareCare, #Alpha1, #RareDiseases and #Alpha1AwarenessDay throughout the campaign. We are looking to encourage our Alpha-1 community to participate in the lead up to this Awareness Day by utilizing the aforementioned hashtags as a way to show solidarity during these uncertain times.
In an effort to increase Alpha-1 advocacy and social media engagement, a social media toolkit has been developed to provide Alphas with guidelines on how to optimize their social media advocacy. This includes best practice tips and a step-by-step guide on specific social media actions.