Steps in creating a community on RareConnect responds to rare disease patients’ need for information and connection by creating international online communities and discussion groups for specific diseases.

The project is an initiative of EURORDIS, the European Organisation for Rare Diseases.

Written by RareConnect team, published 23 days ago.

Basics of creating a community with RareConnect
- We create online communities in 6 languages for rare disease patient groups, in partnership with these groups. When there are no patient support groups, we work with individuals interested in rare diseases.
- Representatives from the patient groups or the individuals act as moderators on the community and keep it active and updated on their groups' activities.
- EURORDIS supports the creation, maintenance and growth of the communities. This is mainly in the form of 3 dedicated community managers and all related project costs like translation, hosting, and technical bug fixes.

Getting started
- These communities are at no financial costs to partners that want to create an international, multilingual community with RareConnect.
- It does take TIME to keep a community a safe, well moderated, and updated space.
- We need you and other people interested in the disease to help us to keep the community an active place.

Step 1: Find partners to build global community
- If you are an individual and not sure where your online community is located, register on RareConnect, then ask a question on this page: Make sure to add the name of your disease as a tag or topic related to your post.
- If you are a patient group and want to create a community on RareConnect, we need to find other patient groups to partner with us on this project.
- We need a few interested patient groups to join us in creating the community. This is so there is a demonstrated need for the community and we will have enough moderators, content, and use of the human translation service.
- If you don't have contacts at other groups, email us or through the Contact page to start the process. 

Step 2: Send us Seeding Document
- After we have found partners, each partner fills out a Seeding Document to add initial information to the community.
- We want to open the community with links to all partners, stories, pictures, and resources reflecting the various experiences of individuals and patient organizations around the world.

Step 3: We create the Test Site
- We take information from the different Seeding Documents that have been completed and enter it onto a Test Community that is only viewable by the partners and with a password.
- This test site helps us all to envision how the final product will look and what we are missing or how we can organize information.
- Key information, stories, and documents are translated between the languages, partners are asked to verify the information about their group and translations to ensure maximum quality.

Step 4: Community Launch
- We agree on a date when we can make the site public and available for new members to join.
- People who sent in stories should join after public launch. We attach their stories to their profiles. Moderators should also join immediately to post a welcome message on the Forum.

Step 5: Promotion and Maintenance
- Add a link to the community on your website. Share a link on your social media and in any other groups you are apart of. Communicating with people from all around the world might not be for everyone, but people should be made aware of the new possibility that a community on RareConnect brings.
- We promote the community: on, on, on EURORDIS eNews, on EURORDIS and RareConnect social media, through Google Adwords Campaigns, using Facebook ads, during EURORDIS events, and any other methods that help better inform people living with a rare disease.

To keep the community thriving and another part of your patient advocacy efforts:
- keep an active moderator
- update the community on activities, events, research
- provide feedback to RareConnect team
- answer questions from community members
- continuously promote the community in your communication materials and social media
- link to the community on your website
- inform the scientific community
- organise a webinar with us
- invite us to present the community at your conference

Questions? We are waiting to talk to you: or through the Contact page

Written by RareConnect team, published 23 days ago.

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