RareConnect Moderators

RareConnect.org is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian or Spanish languages. 

RareConnect benefits from the expertise of volunteer moderators from patient groups to ensure quality information is exchanged on the forum and a safe, supportive environment is created for all members to feel comfortable when communicating. Moderators receive notifications when new posts are made on their online community and can respond to the opportunity to offer information and guidance. Moderators also ensure that translations across RareConnect's five languages are validated.

Moderators receive training via the Online Communities Charter developed by EURORDIS and are actively supported with a blog, and two full time community managers.

RareConnect is grateful to David Oziel who has provided his expertise in the field of rare diseases and management of knowledge based-web system, in particular but not limited to Orphanet. On a volunteer basis, David has been involved in the development of the first patient mailing lists of EURORDIS. He has organised trainings on searching relevant and quality information on rare disease on the web and has coordinated the elaboration of the “Online Communities Charter”.

Moderators come together for a one day meeting to discuss common issues
Moderators come together for a one day meeting to discuss common issues

Page created: 02/05/2014
Page last updated: 06/11/2014
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases