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Advent #4: The target of the Initiative

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'.

DAS ZIEL | Alström - Seltener Gendefekt - Gemeinsam helfen | Branewo gUG | Deutschland (

Impossible? No!


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