Boettcher, Johannes; Filter, Bonnie; Denecke, Jonas; Hot, Amra; Daubmann, Anne; Zapf, Antonia; Wegscheider, Karl; Zeidler, Jan; Schulenburg, J.-Matthias Graf von der; Bullinger, Monika; Rassenhofer, Miriam; Schulte-Markwort, Michael; Wiegand-Grefe, Silke
(London : BioMed Central, 2020)
Background: Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. ...