A disease is considered rare if it affects no more than 5 out of 10,000 people. But when considered together, rare diseases are surprisingly common: It is estimated that about two million children and adolescents in Germany live with a rare disease.
Affected families are often under considerable physical and mental strain, because providing ongoing care and support to the sick child can be exhausting. For example, research has shown that 30-40% percent of mothers become depressed or develop an anxiety disorder as a result of the considerable stress. Siblings also have an increased risk of behavioral disorders because they grow up in an environment defined by the care the family provides to their sick sibling.
This is where the consortium CARE-FAM-NET (Children affected by rare disease and their families – network) comes in. The project seeks to close the existing gap in psychosocial care for families with affected children and adolescents from birth to 21 years of age.
CARE-FAM-NET comprises a total of 45 consortium partners from hospitals and scientific institutions working closely together with health insurance providers, self-help organizations and cooperation partners from youth welfare, the education system and federal policy. The common goal is cross-sectoral psychosocial care for children with rare diseases, their siblings and parents at 18 locations in 13 federal states and, ultimately, implementation of this approach as standard care. To this end, the children’s clinics will be networked with a psychosocial care unit and the regional Center for Rare Diseases.
Two new approaches will be tested; these aim to improve both early diagnosis and early treatment of accompanying mental illnesses for all members of the family. We aim to recruit a total of 1,000 families of children with rare diseases to the project. The affected children and their relatives will receive individual psychosocial help (around 6-8 consultations over six months or an online consultation) as early as possible in the course of the child’s medical treatment. This will facilitate positive coping with the disease and avert the development of psychological disorders.
The project is funded for three years with a total of approx. 7.6 million euros. If successful, the new forms of care will close a significant gap in care and improve the mental health and quality of life of children with a rare disease and their families.