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Bernd and Ben's Experience -Alström Syndrome and their intertwined journey on how to live their best lives.

What’s Inside?

Bernd Rosenbichler was a highly successful, driven professional in the automotive industry, rising in the ranks at Ford, Audi and BMW. He had no plans to have a family, but when he married and he and his wife were expecting a child, he was happy to start a new chapter. However, after six months it became apparent that their son, Ben, had vision problems along with other issues. After the doctor advised doing some genetic tests, Bernd and his wife learned that Ben had Alström syndrome.

This blog covers the intertwined journeys of Bernd and Ben as they began to formulate their lives and how to live them to the very best, and is part of a series that Volv is working on to understand and share more about rare disease patient experience and how parents, families, primary carers and wider society are impacted after a diagnosis:

  • Information on Alström Syndrome 
  • Life changing decisions and the impact on family life
  • The need to educate
  • The need to create awareness and create communities of expert knowledge
  • Why art is therapeutic and done right, just a heck of a lot of fun! 

 

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