Résumé :
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Any rare disease patient organisation that offers 1) information about a given rare disease or rare disease related topic or 2) psychological support to the patient, can be classified as a rare disease (RD) help line (HL). Traditionally, user enquiries and HL answers are phone-based, although they can also exist in the form of emails, letters, SMS and on site face-to-face interactions. Responses can in turn be given orally, in writing or by email. Individuals who require the service provided by HLs include patients, patient carers, family members, friends, social and healthcare professionals, and the media. The primary role of a HL is to provide information and support to the callers.
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