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 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