Auflistung Forschungszentren nach Schlagwort "Rare diseases"

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Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

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. ...
Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

Litzkendorf, Svenja; Frank, Martin; Babac, Ana; Rosenfeldt, Daniel; Schauer, Franziska; Hartz, Tobias; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central, 2020)

Background: Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous ...

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