Improving quality of life in patients with rare autoimmune liver diseases by structured peer-delivered support (q.rare.li): study protocol for a transnational effectiveness-implementation hybrid trial

HIGHLIGHTS

• who: Natalie Uhlenbusch from the face [12]In addition, disease-specific approaches are not feasible due to the high number of different rare diseases [13]. Geographical dispersion of patients further complicates reaching individuals with rare diseases for healthcare services. To tackle these challenges and address the unmet psychosocial support needs of the rare disease community, we developed a support program at the University Medical Center Hamburg-Eppendorf in Germany. The program was developed based on pre-assessed needs of patients with rare diseases [14]. Patients receive a structured self-help manual, which they complete from home over . . .
  

   

  

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