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Abstract This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease.
Clinical Intelligence Ashleen Crowe, Helen McAneney, Patrick J Morrison, Margaret E Cupples and Amy Jayne McKnight British Journal of General Practice 2020; 70 (694): 260-261. DOI: https://doi.org/10.3399/bjgp20X709853 INTRODUCTION A rare disease is defined as any life-limiting or chronically debilitating disease affecting <1 person in 2000, with many rare diseases affecting <1 person per 100 000.
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