RareConnect.org responds to rare disease patients’ need for information and connection by creating international online communities and discussion groups for specific diseases.
Basics of creating a community with RareConnect
- We create online communities in 8 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.
Step 1: Find partners to build global community
- 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 [email protected]
Step 2: Send us Basic information about the disease
- We need to add initial information to the community:
- Disease Name
- Disease description (Orphanet is usually a good source)
- Any article, FAQ, link, useful information about the disease
Step 3: Create a profile
- Register to RareConnect and join the community. You can also register your patient organization if you belong to one. Fill in the profile to make sure others can identify you and add your location if you wish to appear on the community map.
- Post a welcome message on the Updates section or share your story
Step 4: 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 part of.
- We promote the community: on RareConnect.org, on EURORDIS.org, on EURORDIS eNews, on EURORDIS and RareConnect social media, 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
- organize a webinar with us
- invite us to present the community at your conference
Questions? We are waiting to talk to you: [email protected]