NF Kinder Expertisezentrum
The NF Kinder Center of Expertise is a specialized resource center for children and adolescents with neurofibromatosis in Austria, offering comprehensive care.
Its services include medical care, psychological support, and counseling on available social services and complementary therapies, such as speech therapy and occupational therapy. This ensures the best possible care for children and adolescents with neurofibromatosis, schwannomatosis, or CMMRD.
The NF Kinder Center of Expertise is part of the European Reference Network for Genetic Tumor Predispositions (ERN GENTURIS), the European NF Group (ENFG) and the Clinical Care Network of CTF Europe.
In addition, the NF Center of Expertise collaborates with external partners in the fields of genetics and orthopedics. Families with a child suspected of having NF receive expert advice, and if neurofibromatosis is confirmed, ongoing care can also be provided at the NF Center of Expertise.
Care includes:
- Timely diagnosis
- Regular screening for tumors and non-tumor manifestations
- Care, therapy, and treatment when tumors occur or are present
- Neuropsychological care (diagnostics, training, reintegration)
- Psychosocial care
- Collaboration with patient organizations
- Continuing education and training (for healthcare professionals and patients)
- Counseling on social and labor law issues
Care also includes participation in therapy optimization studies at all phases. This ensures therapy at an international standard.
In addition to clinical care, the team at the NF Children’s Expertise Center participates in international committees to develop guidelines for the best possible diagnosis, care, and therapy, including a smooth transition to adult care.
The opportunity to discuss complex patient cases from across Austria in interdisciplinary boards organized by the NF Children’s Expertise Center enables improvements in patient care at the national level.
