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

 

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases