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December 2009

Rare Disease Info: Guidelines & Manual


This set of instructional materials is designed to help patient groups provide quality information about rare diseases and to improve access to information for people living with rare diseases.

The Guidelines document summarises the best approaches for providing information. The Manual in three parts gives guidance on how to deliver information, including hands-on advice on topics such as giving interviews to the press and publishing a website.

Over 400 patient groups contributed to the development of these publications through surveys, interviews and workshops, sharing their experiences and expertise in providing information about rare diseases, shaping the principles and examples of best practice described in the Guidelines and Manual.

Manual contents:

  • Leaflet
  • Booklet 1: Preparing the group and delivering information
  • Booklet 2: Structuring, organising and managing the group
  • Booklet 3: Toolbox and annexes