Author
Dr.-Ing. Heinz Stutzenberger, as published in Alpha1 Journal 1/2024.
Following the successful completion of the first General Assembly of the Alpha-1 Europe Alliance (see our report in the Alpha-1 Journal 2/2023), the board and member representatives have commenced their work. Especially in the initial phase of the young organization's existence, the coordination effort is considerable, which is why the board meets twice a month to make necessary decisions and monitor the progress of the resulting activities. A members' meeting is held once a month; all these events take place online. Strategic decisions were made and important activities were initiated during the first meetings.
- The projects to be carried out in the current calendar year have been defined, including an awareness campaign (more on this below), an Alliance launch event in Brussels for the autumn, and various training events throughout the year.
- From the multitude of possible memberships in European umbrella organizations, a systematic evaluation was used to determine which ones the Alliance would adopt and who would represent the Alliance in each case.
- Initial considerations regarding the appointment of advisory boards have been made.
- The website has been significantly expanded compared to the basic version from the founding phase; see [link/reference] www.alpha1europe.org
Since many of the aforementioned activities are not feasible without financial resources, a working group was formed to take care of raising funds, and it did so with considerable success: in addition to the companies CSL Behring and Grifols, which have long supported Alpha-1 associations, the pharmaceutical companies Mereo and Takeda were secured as sponsors, thus securing a significant portion of the activities for the first fiscal year.
My personal activities have also focused primarily on European policy, where the aim is to assess the impact of the recently adopted regulation on substances of human origin (SoHO) and – where possible – to influence it in the interests of recipients of blood plasma-based products. Another key focus is the inclusion of alpha-1 antitrypsin on the list of critical medicines at the European Medicines Agency (EMA).
The Alliance has already implemented its first major project: a campaign for European Alpha-1 Awareness Day, which takes place annually on April 25th and aims to raise public awareness of Alpha-1 antitrypsin deficiency and its various manifestations. A significant number of posts with engaging graphics and informative short texts were published on the Alliance's channels. These were translated into twelve different languages. A total of 19 European Alpha-1 associations or support groups took up the initiative, and our sister organization, the American Alpha-1 Foundation, also shared our posts.
Overall, the Alpha-1-Europe Alliance has established itself quickly and solidly in its first few months; many companies and organizations are seeking contact, so the few active volunteers are already facing serious scheduling difficulties. We will continue to report regularly on the Alliance's further activities.
