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.


  • 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


The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases