This initiative aims to establish a central hub ('Center of Excellence') in Germany for Patients with Alstroem Syndrome (and even other rare diseases) are funded and operated sustainably.
Permanent local facility
Development of specific clinical expertise
Regular care and care for patients
Holistic view of the medical history
Development of early diagnostics, including with the help of AI-supported procedures
Education and information campaigns
Networking global activities
Social events with those affected
+++ sorry, video only in German +++
Alstroem syndrome is a complex predisposition, but this is not only this rare disease, but most of the health impairments.
Meeting them requires a horizontal, systemic approach to the entire patient journey.
This starts with (data-driven) early diagnosis and prevention leads to diagnostics up to the management of the effects of this disease. This means that patient and benefit orientation must be considered together – from many perspectives.
Thus, medical "cases" move a bit away from the usual utilitarianism. The result is a patient-oriented, diversity-oriented approach to dealing with the disease, adapted to the individual needs and degree of illness of each patient.
This data-driven, future-oriented and sustainable approach is more inclusive, taking into account individual life contexts and styles, disease profiles and care needs.
This requires an organization, preferably physical (or partially virtual): the 'Center of Excellence'.
# BECAUSE WE CAN