The purpose of the association is to promote public health and education. This purpose is achieved in particular by raising awareness about alpha-1 antitrypsin deficiency, advising parents of affected children, and organizing training courses for group leaders and their deputies, for affected individuals and their families, as well as for interested physicians. The association aims to increase public understanding of the disease and its symptoms in order to positively influence research and treatment methods. It strives to implement medically sound measures to support its members and assists in the establishment and operation of self-help groups. In this way, it aims to contribute to enabling patients with alpha-1 antitrypsin deficiency to lead self-determined lives. The association collaborates with other organizations.
Guiding principles for neutrality and independence in dealing with economic interests:
The dealings with commercial enterprises must not restrict the independence of self-help groups and must be transparent.
To maintain neutrality and independence in dealings with commercial enterprises and economic interests, particularly when simultaneously receiving funding from health insurance funds and/or their associations under Section 20h of the German Social Code, Book V (SGB V), and to ensure maximum transparency, the non-profit organization Alpha1 Germany has published the following guiding principles. By publishing these principles, the patient organization commits to adhering to them.
Principles
1. Autonomy of self-help
Financial contributions may be accepted from individuals under private and public law, from organizations, and from commercial enterprises, provided that this does not create a dependency. This requirement is met if no commercial enterprise provides the predominant funding. In all areas of cooperation with commercial enterprises, the patient organization must retain autonomy over the content of the work, its implementation, and the use of the funds.
2. Transparency
„"Support from" and "cooperation with" – commercial enterprises are handled transparently. Advertising from commercial enterprises is clearly marked and not passed on without comment. Statements and recommendations, especially from third parties, should be accompanied by source citations. Funds received from sponsorships and grants are published at least once a year. See below. Donate & Support.
3. Data protection
Alpha1 Deutschland eV fully complies with applicable data protection regulations. This ensures, among other things, that member data is not passed on to, for example, commercial enterprises.
4. Information
If commercial enterprises are granted communication rights, such as the right to use the association's name or logo in publications, product information, on the internet, in advertising, or at events, written agreements must be concluded and published upon request. The direct or indirect promotion of products, product groups, or services for diagnosis and therapy is prohibited.
5. Events
Alpha1 Germany always ensures that neutrality and independence are maintained at its own events. This commitment also applies to organizational matters. The selection of the venue, the framework, the schedule, and the content of the event are determined by the association. If fees are paid, they are reasonable. Participant data from events will not be shared with commercial enterprises.
When selecting speakers, care is taken to ensure that the self-help aspect remains clearly recognizable.
Events, seminars, etc., that are sponsored by health insurance companies/associations do not involve any cooperation with commercial enterprises.
Gernsheim, February 1, 2022
Unanimously approved by the board
All personal designations and functions refer to all genders.
