Two women in living room smilingPseudomyxoma Survivor is proud to introduce a new online community. In partnership with EURORDIS and NORD, two 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; then it will be translated into 4 other languages
  • Read other 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. We will still be supporting our Facebook group, unimaginable to think otherwise!

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

The team at RareConnect from EURORDIS and NORD 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. You can also visit our RareConnect page for more details, including some guidelines from the team at RareConnect and a link to the Terms and Conditions.



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