PARTNER
The goal is to help many - with a Center of Excellence
A CLEAR GOAL
A Center of Excellence - for Alström or more!
01
Betroffene finden:
Diagnosezeiträume von im Schnitt 8 Jahren für seltene, genetische Erkrankungen sind schlicht zu lange. Für diagnostizierbare und therapierbare seltene Erkrankungen sind heute schon frühe Gentests möglich. Allerdings gilt dies nicht für die große Gruppe der noch nicht therapierbaren Erkrankungen. Sowohl Verfahren, die mit künstlicher Intelligenz aus verfügbaren Daten Prognosen erstellen als auch genetische Testverfahren (für alle) stehen hier aktuell im Fokus.
02
Patienten organisieren
Einer der wichtigsten Schritte ist es, den Austausch und die Interaktion zwischen Betroffenen und den Angehörigen zu fördern. Sich so zu organisieren, dass man gemeinsam an Fortschritten arbeiten kann.
03
Daten sammeln
Patientenregister sammeln Daten zu bestimmten Krankheitsbildern. Nur so erhält man genügend Informationen, um zielgerichtete Forschung zu betreiben. Dafür müssen so viele Betroffene wie möglich identifiziert werden. Neben Patientenorganisationen stellt die (kommunikative) Aufklärung einen wichtigen Bausteine dar, um sowohl der Medizin als auch die mögliche Betroffene zu informieren. Je mehr Daten es zu bestimmten Krankheitsbildern gibt, desto attraktiver ist es, Forschungsaktivitäten zu starten.
A CLEAR GOAL
A Center of Excellence - for Alström or more!
This initiative aims to establish a central hub ('Center of Excellence') in Germany for Patients with Alström 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
THE WAY
Initial situation in Germany
Imagine: You drive your car to the service. The first workshop checks the engine, the second the battery, the third the tires, etc. - but no one knows whether the car as a whole is working. So it is with Alström and many other rare diseases. Nobody has a holistic view of the disease. From cardiologist to ENT, then to ophthalmologist, neurologist, blood test, endocrinology & diabetology and many more. Sometimes annually, sometimes in shorter cycles. But it is up to the people concerned to organize this and to implement it according to the local possibilities.
Exchange among those affected? Contact with other patients? Contact point for questions? There is not any. Unimaginable in a car. Not with a person. There is no holistic view of Alström Syndrome or many other rare diseases.
BENCHMARK
The Birmingham Women's and Children's Hospital
The Birmingham Women's and Children's Hospital has set up specific Alström care - together with Alström UK. Among other things, there are annual patient controls there. The patients are also embedded in social activities. For the Center of Excellence planned in Germany, Alström UK should be the blueprint that we want to use as a guide. Link: bwc.nhs.uk
BENCHMARK
The Birmingham Women's and Children's Hospital
The Birmingham Women's and Children's Hospital has set up specific Alström care - together with Alström UK. Among other things, there are annual patient controls there. The patients are also embedded in social activities. For the Center of Excellence planned in Germany, Alström UK should be the blueprint that we want to use as a guide. Link: bwc.nhs.uk