How you can contribute to the RARE Portal

The Rare Awareness Rare Education (RARE) Portal is a living website that is continually being updated to keep up with advances in rare disease health care, policy, research and more. The information, links and resources on the RARE Portal are curated via a methodical and purposeful process. This process ensures information on the RARE Portal is current and sourced from credible sources backed by well-respected experts or governments.

All rare disease stakeholders are invited to help maintain the currency and accuracy of information on the RARE Portal. If you would like to contribute content or suggest a revision, please fill out the form below.

You may wish to let us know:

  • About a broken link
  • If there is a missing link to a key resource, information or initiative
  • If you note any inaccurate or outdated information
  • If you wish to provide additional input for a particular page
  • If you are a new rare disease support group and would like to be linked from the RARE Portal, or if you would like to contribute to the development of a new or existing rare disease information page
  • About new and approved clinical care models/guidelines that should be included on the RARE Portal

All contributions will be considered and assessed for currency and credibility in consultation with multi-stakeholder experts.