Background: Most rare diseases are chronic conditions with variable impairment of functionality, which can result in a need for rehabilitation. To our knowledge, there are no systematic studies on the rehabilitation needs of patients in centres for rare diseases in the literature. Our hypothesis is that participation of these patients is so limited that there is an increased need for rehabilitation. For this reason, a survey on the need for rehabilitation was carried out in all patients presenting to the centre for rare diseases, in order to assess the need for rehabilitative measures to counteract disturbances in activity and participation. Methods: A cross-sectional study was performed to collect data using a written questionnaire from December 2020 to June 2021, including patients presenting personally in the center for rare diseases. Results: Nearly 70% of the participants assessed their own ability to work as critical. Of those surveyed, n = 30 (44.9%) had PDI total ≥ 33 points and, thus, a clear pain-related impairment. Conclusion: The results show functional restrictions in the areas of mental well-being and activity. As expected, the health-related quality of life is reduced as compared to healthy people. Almost half of the participants reported significant pain-related impairments, however, only 9% of all respondents stated that they had received appropriate pain therapy. The results show the need for rehabilitation-specific skills in the care and counseling of patients with rare diseases.

Background: It has already been shown that it is feasible to use International Classification of Functioning, Disability and Health (ICF) Sets as self-assessment instruments. We used this idea to design an ICF-based screening tool to assess patients of a broadly based rehabilitation department. It was developed for the purpose of having a screening tool before taking the anamnesis, as well as for rehabilitation planning and follow-up. Methods and Materials: The Rehabilitation Goal Screening (ReGoS) instrument is a self-report questionnaire which was developed based on the most relevant domains from the ICF Core Sets for chronic pain and rehabilitation. The ICF categories were translated into plain language and 0–10 Likert scales were used. A retrospective analysis of routine clinical data using the ReGoS tool, Work Ability Index (WAI) and Hospital Anxiety and Depression Scale (HADS) in paper- or tablet-based form was performed. Results: The average age of the N = 1.008 respondents was 53.9 years (SD = 16.2). Of the respondents, 66% (n = 665) were female. At the time of the survey, 48.3% (n = 487) of the patients were employed. ReGoS results demonstrated that the highest restrictions on a scale from 0 to 10 were found in the areas of energy and drive (M = 5.79, SD = 2.575) and activities of daily living (M = 5.54, SD = 2.778). More than a third of the respondents rated their work ability as critical. Conclusion: The use of the ReGoS instrument as an ICF-based screening tool based on a self-report questionnaire provides relevant information for clinical diagnosis, participative goal setting and a detailed functional capacity profile.