Promoting your RareConnect community

Why promote your community?


  • The RareConnect project is a partnership. The community needs your expertise and encouragement to thrive as an international space for people affected by a rare disease and their caregivers to meet. International connections between patient groups means researchers and treatment developers may be more inclined to research the disease.
  • Your members can contribute to the global conversation, they just need to be made aware of the community and invited to join.
  • When more people join your community they are able to help in the form of support, global connections, and access to trusted information.
  • Many of our partner rare disease patient groups have been very successful using their communities to spread awareness events, fundraising activities, and research partnerships – we’re happy to help brainstorm some ways your RareConnect community can become a key part of meeting your organization’s objectives.
  • The more links on other relevant sites that point to RareConnect, the better visibility all RareConnect communities have with search engines. We proudly feature links to our partnering patient groups in multiple places on RareConnect, boosting your groups’ appearance or ranking in search engines.
  • While most organizational websites have primarily static content, content on RareConnect is being updated every day. Linking from your website to your community, with its new content, gives your members reasons to keep coming backLearn how to add a link on your website.

How and where to promote your community

With a badge on your website, this example from AHC Iceland

badge example

Or in a dedicated section of your website with the link to your specific community


As a direct link from your website’s navigation bar


In a Facebook message. Tag us in the message by typing @RareConnect

Facebook example

In a Tweet, you can find us on Twitter @RareConnect



Newsletter, listserv, whatsapp group, Facebook group, here is an example announcement text:

[YOUR GROUP] is proud to introduce a new online community to our members and friends. In partnership with EURORDIS, one of the world’s most established rare disease patient organisations, we’ve created a place where you can connect with others from around the world who know what you’re going through.

Among the many exciting features our new community offers, you can:

  • Participate in discussion groups – or even just read what others have to say
  • Request human translations of forum posts and comments to connect with others who don’t speak your language
  • Post a personal profile – share as much or as little as you’d like about yourself
  • Post personal photos or videos (optional)
  • Invite other members to be friends
  • Share your story through your profile, after, it will be translated in to 10 other languages.
  • Read others’ stories from people in different countries to learn about their experiences

You’ll also find coping strategies and answers to your questions, as well as vital support, compassion, encouragement, and inspiration from others sharing experiences similar to yours. Upon joining, you’ll have complete control of your privacy options and can communicate with others like you in a safe, secure environment where your personal information is not shared with 3rd parties.

We encourage you to join the community and start connecting with others across the globe. Registration is free and only takes a minute.

To get started, please visit [COMMUNITY URL] and click on the “Join Now” button.

The team at RareConnect would love to hear your thoughts on the new community, and are happy to answer any questions you may have – please feel free to contact We look forward to seeing you there soon.


At your next conference or family meeting

paul, wife, colleen

Promote your RareConnect community at conferences and exhibits. Target doctors, newly diagnosed families, current members. It might be possible for a member of the RareConnect team to present with you at your next conference, just ask. We can send brochures or PowerPoint presentations to your organization to display at these events.



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