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.
Frame:
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'.
DAS ZIEL | Alström - Seltener Gendefekt - Gemeinsam helfen | Branewo gUG | Deutschland (alstroem.de)
Impossible? No!
# BECAUSE WE CAN
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