Two women in living room smilingRareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

Some guidelines from our colleagues at RareConnect

  • Choosing a username
    It is recommended that you do not use your full name, to protect your privacy
    Can be your first name only or a pseudonym
    Can include patient group name or abbreviation
  • Never post personal email or phone number on the forum, use private messages for that
  • Make your profile ‘Private’
  • Make your posts ‘Private’
  • Don’t accept ‘friend requests’ from people who do not fill out basic profile info: First name, country, connection to PMP

As with any online community, we recommend you read the Terms and Conditions before joining.



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