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
 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases