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:

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

 

Length: Guidelines: 4 pp.; Manual: 70 pp.

Languages:

  • Guidelines: In het Nederlandsi svensk - Á íslensku    See also the French, Spanish, German, Italian and Portuguese sections of our website for translations of the Guidelines in those languages.
  • Manual: also available in Spanish

 

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases