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.