Children affected by rare disease and their families – network


A disease is rare if not more than 5 out of 10.000 people are affected by it. According to estimates about two million children and adolescents in Germany are affected by one of the up to 8.000 different rare diseases (RD). RD are a very heterogeneous group of complex disease patterns which often are heritable, chronic and associated with reduced life expectancy. Already in the childhood, these kinds of diseases usually lead to symptoms. The disease management requires a high order of support and nursing from the parents and siblings. Therefore, it leads to high demands to the family. Children and adolescents with RD, their siblings and parents therefor often are under psychological pressure. The permanent burden can cause psychic symptoms and lead to mental comorbidities. 30 to 40 percent of parents are in the clinical range of anxiety and depression. Affected children show a higher risk of externalizing and internalizing behavioral disorders as well as developmental disorders. The siblings grow up in a living environment which is characterized by the nursing and medical care of their sick sibling. They are often included in the responsibility for their sibling and its nursing and technical-medical tasks. Despite their high psychological stress, all family members have to “function” to a high rate and organize the care of the sick child. Despite their burdens and mental symptoms, parents generally do not seek conventional psychosocial care because that would require additional temporal and emotional resources. In the children’s hospitals, there are no resources available for the psychosocial care of these children and their families. Furthermore, most families do neither get to a socio-pediatric center nor to an ambulant psychotherapy. Therefore, health economists from the working team headed by Prof. Graf von der Schulenburg, who are the leading professionals in that topic, summarize in the BMG research report from 2009 – which addresses actions to be taken for RD in Germany – that psychosocial care is urgently required from the viewpoint of health economics. Psychosocial support which is oriented towards the needs of the families and which can be easily integrated in the daily routine of the families in interdisciplinary, cross-sectoral care structures appear to be necessary.


The group CARE-FAM-NET aims at facing the mental symptoms, comorbidities and their chronification of children and adolescents at the age of 0 to 21 years who are affected by RD, their siblings and parents with the help of diagnostics, early detection and early treatment. The main aims are the implementation and evaluation as well as the transfer of two new evidence-based psychosocial types of care (CARE-FAM and WEP-CARE) for children with RD and their families at 17 clinical centers in 13 federal states. That is why CARE-FAM-NET is connecting children’s hospitals with centers for psychosocial care and centers for rare diseases at those 17 clinical locations.

Two new innovative psychosocial types of care (TOC) will be integrated in the conventional care, the existing care structures will be connected and interventions which are individually adapted to the respective family will be provided.  The TOC will be continuously evaluated in a multicentric randomized and controlled study. If successful, they will be transferred in the standard care. All the affected children and family members shall obtain individual psychosocial help in addition to their somatic treatment, which supports a positive coping with the disease and responds to mental disorders. A momentous gap of care will be closed by this project. Furthermore, the mental health and quality of life of children with RD and their family members will be strongly improved.

New psychosocial types of care (TOC)

In the very center of the group there are 2 new types of care (TOC) which meet the following requirements: cross-sectoral, demand-based, family-oriented, interdisciplinary. The face-to-face family intervention CARE-FAM is a cross-sectoral and psychodynamic oriented intervention including diagnostics, early detection and early treatment of mental abnormalities in families with children and adolescents with RD. CARE-FAM is a low-frequent short intervention with 8 sessions per family over a six-month period which can also be carried out in a home visiting context. The principal issues are: coping with the disease, the social network of the family, family relationships as well as previous and coming professional help. It is based on a demand analysis from the viewpoint of affected families, an effect model and pilot studies. Most of all, the mental health, the quality of life and life satisfaction of all family members will be addressed. The online intervention WEP-CARE is addressed to the parents of affected children and adolescents. It is based on principles of the cognitive-therapeutic writing therapy. WEP-CARE also aims at the reduction of mental afflictions such as anxiety symptoms, depressive symptoms or stress disorders and the improvement of the family coping with the disease. The participants accomplish ten standardized writing tasks on a data proof internet platform with the help of trained professionals in a weekly interval and obtain individual feedback.

The model to create sustainable psychosocial care structures in CARE-FAM-NET

At the heart of the model there are the psychosocial TOC and their implementation at 17 clinical locations, completed by the continual evaluations.

Consortium partners

Statutory health insurances

  • Techniker Krankenkasse
  • DAK-Gesundheit
  • Kaufmännische Krankenkasse
  • Betriebskrankenkasse Mobil Oil
  • IKK Classic
  • AOK Baden-Württemberg

New types of care (TOC)

  • CARE-FAM (face-to-face): Prof. Silke Wiegand-Grefe, University Medical Center Hamburg-Eppendorf
  • WEP-CARE (online intervention): Prof. Paul Plener, Ulm University Medical Center

Public relations

  • Dr. Mundlos, Achse e.V., Berlin
  • Dr. Dirmaier, University Medical Center Hamburg-Eppendorf

Clinical trial evaluation

  • Health economics: Prof. Matthias Graf von der Schulenburg, aQua Institute, Hannover
  • Medical biometry: Prof. Karl Wegscheider, University Medical Center Hamburg-Eppendorf
  • Quality management: Dr. Gerald Willms,  University Medical Center Göttingen
  • Access paths: Prof. Monika Bullinger, University Medical Center Hamburg-Eppendorf

External data management and monitoring

  • Clinical Trials Center (CTC North)

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34 consortium partners at 17 clinical centers in Germany for the implementation of the TOC:

  • PD Dr. Jonas Denecke & Prof. Dr. Silke Wiegand-Grefe
    University Medical Center Hamburg-Eppendorf
  •  Prof. Dr. Astrid Bertsche & Prof. Dr. Peter Kropp
    Rostock University Medical Center
  • Prof. Dr. Frank Rutsch & Dr. Martina Monninger
    Münster University Hospital
  • Prof. Dr. Ulrike Schara & Prof. Dr. Johannes Hebebrand
    Essen University Hospital
  • Prof. Dr. Silvia Schneider & Prof. Dr. Thomas Lücke
    University hospitals of the Ruhr University of Bochum & Catholic Clinic
  • Prof. Dr. Jörg Dötsch & Prof. Dr. Stephan Bender
    University Hospital Cologne
  • Prof. Dr. Anibh Das & Prof. Dr. Karin Lange
    Hannover Medical School
  • Prof. Dr. Knut Brockmann & Prof. Dr. Eric Leibing
    University Medical Center Göttingen
  • Prof. Dr. Michael Siniatchkin & Prof. Dr. Eckard Hamelmann
    Evangelical Hospital Bethel Bielefeld
  • Prof. Dr. Angela Kaindl & PD Dr. Sibylle Winter
    Charité Berlin
  • PD Arpad von Moers & Prof. Dr. Michael von Aster
    DRK Clinic Berlin-Westend
  • Prof. Dr. Wieland Kieß & Prof. Dr. Anja Hilbert
    University of Leipzig Medical Center
  • Prof. Dr. Bernd A. Neubauer & Prof. Dr. Johannes Kruse
    University Hospital of Gießen and Marburg
  • Prof. Dr. Michael Zemlin & Prof. Dr. Alexander von Gontard
    Saarland University Medical Center
  • Prof. Dr. Ute Spiekerkötter & Prof. Dr. Christian Fleischhaker
    University Medical Center Freiburg
  • Prof. Dr. Dr. Michael Frühwald & Prof. Dr. Michele Noterdaeme
    Augsburg Hospital & Josefinum Augsburg Hospital
  • Prof. Dr. Ulrich Brandl & Dr. Andrea Dieckmann
    Jena University hospital

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Further information

Consortium leader

University Medical Center Hamburg-Eppendorf, Prof. Dr. Silke Wiegand-Grefe (PI), department for child and adolescent psychiatry, psychotherapy and psychosomatics, and PD Dr. Jonas Denecke (Co-PI), department for child and adolescent medicine.


Innovation Committee at the Federal Joint Committee (Innovationsausschuss beim Gemeinsamen Bundesausschuss (GB-A) with 7.6 Mio €.


From 1st October 2018 to 30th September 2021

For questions please contact us via e-mail:

Prof. Dr. Silke Wiegand-Grefe: