We are a support group consisting of affected families, doctors and friends. Our purpose is:
To enable the exchange of experiences among concerned people,
to inform about possible treatments and therapy approaches,
to assist with social questions
and not to remain in consternation, but to look forward with hope.
Here you can find the report about our annual meeting 2023.
And below is the link to a presentation in English given by PD Dr. Dorothea Haas, University Children’s Hospital Heidelberg, at the „Temadag SLO“ in October 2019 in Stockholm for parents of affected children, doctors and professionals.