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Patient:innenorganisationen & Kooperationspartner

  1. Department of Pediatrics and Adolescent Medicine
  2. Our Departments
  3. Division of Neonatology, Intensive Care Medicine and Neuropediatrics
  4. Pediatric Neuro-Oncology
  5. Patient:innenorganisationen & Kooperationspartner

Comprehensive psychosocial care requires the involvement of patient organizations, partners, and supporters. We therefore work closely with the associations and organizations listed below, which offer a wide range of support services for patients and their families who are undergoing treatment in pediatric neuro-oncology.

Kinder-Krebshilfe für Wien, NÖ und Burgenland

The Kinderkrebshilfe für Wien, NÖ und Burgenland is a regional association founded over 30 years ago by parents whose children have been diagnosed with cancer. The organization provides direct on-site support to affected patients and their families at the University Clinic for Pediatrics and Adolescent Medicine during the intensive period of their child’s treatment.

The services offered by the Children’s Cancer Support Association for Vienna, Lower Austria, and Burgenland include:

  • A parents’ café held every two weeks at the day clinic or ward
  • Individual counseling sessions led by affected parents for other affected parents
  • Financial assistance options for patients’ families
  • Parking passes for the AKH garage for patients’ families
  • Funding for training toward the European Computer Driving License (ECDL)
  • Funding for equine therapy through the e.motion association
  • Volunteer projects: e.g., Clinic Nannies, Lernblitz
  • Support for “My Logbook—I Know My Way Around!”
  • Funding for staff: Katharina Sjöstöem (External Oncology Service), Mag. Stephanie-Dominique Karigl (Mobile Psychological Service), Kerstin Krottendorfer, MA (Clinical Social Work)

NF Kinder - Hilfe für Neurofibromatose-Patient:Innen und Angehörige, Österreich

The “NF Kinder” association was founded in 2013 by Mr. Claas Röhl, an engineer and father of a child with the condition. Neurofibromatosis is a disorder characterized by an increased risk of developing tumors of the central nervous system. Together with the University Clinic for Pediatrics and Adolescent Medicine, the NF Kinder association established the NF Kinder Center of Excellence. The goal of “NF Kinder” is to improve care for patients throughout Austria and to advance research. The “NF Kinder” association provides support through the following initiatives:

  • Psychological research project “Ready for School & Everyday Life Despite NF”
  • Funding for the research workshop
  • Funding for continuing education programs
  • Funding for equine therapy through the e.motion association
  • Information materials (online and offline)
  • Financial support options for patients’ families
  • Funding for social skills training for children
  • Funding for staff: Lena Fichtinger, MSc (Clinical Psychology), Nina Fasan, MSc (Clinical Psychology), Kerstin Krottendorfer, MA (Clinical Social Work)
  • Biennial NF Symposium for professionals, patients, and their families

Österreichische Kinder-Krebs-Hilfe

The Österreichische Kinder-Krebs-Hilfe is the advocacy organization for children and adolescents with cancer and their families in Austria and is composed of six regional associations. One of the Österreichischen Kinderkrebshilfe core tasks is providing aftercare.

The goal of the various aftercare projects is to help affected families better cope with their experiences and changed living conditions and to integrate these into their own lives.

Among other things, the Österreichische Kinderkrebshilfe offers the following programs:

  • Youth & Future
  • Playing and Moving: A physical activity program for children with cancer aged 7 to 14 (1020 Vienna)

SURVIVORS

Survivors are people who were diagnosed with cancer during their childhood or adolescence. In 2020, survivors founded their own organization, “Survivors Austria,” which represents the interests of survivors within Austria as well as in European health policy. There are representatives in all federal states and a variety of programs available. Survivors Austria has two main pillars: mentoring (support provided in the hospital by survivors who have completed specialized training as mentors) and survivor meetups. In Vienna, for example, regular meetups are held. Additionally, as part of the mentoring program, appointments can be organized directly at the hospital. Here at the hospital, these always take place on the third Thursday of the month.

 

Other key partners include, among others: