Moderator Guide

This guide was established to aid you in your role as a moderator. We want to make sure you
have all the tools to effectively use this platform.

Description of time commitment

This depends on many factors including: the number of active moderators, the time since the community has been launched, the number of members in the community, and if there is high participation regarding a certain topic. On average many moderators spend 15 minutes on their tasks per week or about 1 hour per month.

Main scope of the post

RareConnect is on online social network (available at whose aim it is to promote global conversation and collaboration to improve the lives of rare disease patients. An initiative of EURORDIS, the European Organisation for Rare Diseases, the project was launched as a pilot in 2009 as Rare Disease Communities and renamed as RareConnect in 2012. The initial goal is to create disease-specific online patient communities that enable patients to obtain valuable information about their disease, share experiences, find disease-specific organizations, and network globally. Each community is built in co-operation with EURORDIS member patient groups active in a specific disease area. The long-term plan for this project is to expand the platform and its capability to connect larger numbers of patients globally, with the objective of supporting clinical trial recruitment and outcomes management, while also increasing knowledge and understanding of rare diseases.

EURORDIS has completed a strategic plan to expand and enhance the RareConnect Online Patients Communities Project. The RareConnect volunteer moderator is an active participant in the implementation of various aspect of that process.

The RareConnect volunteer moderator works with the Online Community Managers to:
• Support the construction and animation of a community.
• Ensure quality information is shared on the community based on the Online Communities Charter.
• Promote good practise community support.

In addition, the RareConnect volunteer moderator’s work is guided by the overall EURORDIS Volunteer Charter but the specific activities within the RareConnect iniative are supported by the RareConnect Online Patient Communities Charter

Specific tasks include, in particular, but not limited to:

• Participate in the creation and set up of a new community with other moderators by providing information from your country and patient group to the RareConnect team.

• Publicise and promote the community within national patient group by ensuring a link to the community is added on patient group website and in communication materials.

• React appropriately to new stories, comments, or forum posts added to the community after receiving an email notification.

• Provide emotional support and a sympathetic listening ear to members in need of an outlet to share their personal journey of living with a rare disease.

• Respond to a member’s need for information by supplying a link to a trusted resource, scientific publication, or patient group publication where appropriate.

• Update patient group on progress and activity on the RareConnect community while keeping the RareConnect team updated on the patient group’s activities.

• Suggest new content (articles, stories, videos) to the RareConnect team.

• Update the community on their activities by posting Stories.

• Send a welcome message through a private message to new members identifying themselves and their patient group.

• Encourage contributions from other members by posting questions, new research updates, or information on treatments from trusted sources

• Correct translations that have been done by translation company, but may be missing the correct rare disease term.

• Ask questions about security, share concerns they might have, and report any
incidents to the RareConnect team.

• Participate in webinars and provide feedback on the community and web tool to RareConnect team.


More information about volunteering at EURORDIS:

If at any point you have any questions, comments, or concerns please do not hesitate to contact us by email or phone. We can also always set up a conference call to discuss your community with you and the other partners.

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