Not registered yet? Please contact our project manager Barbara Heißerer . This area is only for members of the research consortium.

Scientific Background

Useful links

If you seek more scientific background information, advice from patient organisations, or want to connect with other young patients and their families, these links are for you!

Please contact us with suggestions of further helpful links that you think should be added to the list.

EU Research Funding

Patient Organisations and Family Support Groups

European Networks