In December 2016 the German DIG PKU Interest Group on Phenylketonuria and Related Inborn Metabolic Disorders created its own Division for Neurotransmitter Disorders.
The division wants to to achieve
- that children receive optimal medical care to increase their life expectancy and quality of life and to reduce late damage
- that medical knowledge about these rare diseases is collected and shared, perhaps even worldwide, so that more doctors know about them
- that diagnosis and therapy are improved through global collection and coordination of observations and exchange of experiences of those affected
- that the authorities, health and care insurance companies show more understanding for the special problems of our families.
So far, they have been meeting nationwide to exchange experience gained in the design and implementation of the severe disability of their children. They also deal with the difficulties in dealing with health insurance companies, nursing care insurance companies, authorities and offices.
You can find more information on their website!
Their representative can be reached here:
Tel: +49 64 31 / 5 49 93
Fax: +49 64 31 / 5 82 30 9
Handy: +49 15 1 / 25 56 32 71
E- Mail: Kai.Meuer@web.de
E- Mail: firstname.lastname@example.org