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The goal is to help many - with a Center of Excellence

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.

Center of Excellence - Framework:

  • 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

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.

Hersteller in der Werkstatt

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

FUNDRAISING

Goal or is it just a vision?

In order to achieve the goals described here, not only significant fundraising is necessary, but above all a clear elaboration of the final goal that is really achievable and value-adding for as many people as possible.

 

This cannot be done by a person alone, but must be discussed with as many competent experts as possible.

 

In addition to a medical advisory board, there will be further efforts to use a maximum of competence and knowledge not only to describe the final goal, but also to achieve it! 

Birmingham
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