Tasks of the association


1. Obtaining and providing information to patients and their families on the state of scientific knowledge on the various types of amyloidosis, their treatment options, available medicines and other treatment options (therapies, alternative and complementary options, diets, etc.)


2. Provide information about available expert centers that treat one or more types of the disease.


3. Exchange information with other similar organizations at home and abroad and provide this information to patients


4. Participation in international associations in the field of amyloidosis.


5. sending participants to congresses on amyloidosis.


6. Creation of a digital information platform for the exchange of information and other use of digital and other media (print) for the dissemination of information (eg website, facebook, Instagram etc.).


7. Promoting communication between patients for information exchange, e.g. also by organizing patient meetings.


8. Promote measures for the early detection and early treatment of the disease in order to significantly improve the chances of recovery or treatment.


9. Close communication with doctors, especially in Germany, but also abroad, and involvement of doctors, if necessary and necessary, in the work of the association


10. Cooperation with doctors in negotiations with companies (pharmaceuticals, therapy), public health institutions (BM for health, provincial and district offices etc.) and public and private insurance companies (GKK, PVA, SVA etc.)


11. Establish an organization to assist in the care of advanced stage patients.


12. mediation in conflicts between patients and doctors


In any case, items 11 and 12 are projects that will only be possible in a few years and with the availability of adequate human resources.