Valeria Association

The example of Valeria shows how great of a challenge parents face, when their child suffers from an ultra rare disease:

  • psychological stress
  • there is no standard therapy (because the market is too small for pharmaceutical companies)
  • Parents are forced to take everything into their own hands to make therapy possible:
    • Development of knowledge
    • worldwide networking with specialists
    • Recruitment of specialists for therapy
  • Financing the therapy (health insurance and IV do not cover costs)
  •  Everyday life must continue to function despite the enormous task

The parents of Valeria (Alexandra and Mario Schenkel) would like to support those affected by a ultra rare disease. For this purpose they founded the Valeria Association.

The Valeria Association is committed to ensuring that:

  • knowledge about the existence and cure of ultra rare diseases is promoted.
  • the exchange of experiences between affected persons is made possible.
  • research in the treatment of ultra rare diseases is promoted.
  • experts and scientists are networked.
  • money is collected for research projects.
  • therapies are made possible.

want to know more about the Valeria Association