How you can contribute to the RARE Portal

The rare disease landscape is constantly changing. Rapid technological advances are leading to increased knowledge and complexity increases uncertainly. The Rare Awareness Rare Education (RARE) Portal is a living website that is continually growing and being updated to keep up with the ever-evolving landscape of rare disease healthcare, policy and research. The information, links and resources on the RARE Portal are curated via a methodical and purposeful process. This process enables the sharing of information that is current, up-to-date and active, and from credible sources backed by well-respected experts or governments.

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

The following is a list of potential contributions to, or notifications about an issue with, the RARE Portal. You may wish to let us know:

  • About a broken link
  • If there is a link to a specific key resource, information or initiative missing from the RARE Portal
  • If you note any inaccurate or outdated information on the RARE Portal
  • If you wish to provide additional input into the copy on 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 funding opportunities for rare disease research
  • About new PhD candidature opportunities for doctorates in rare disease research
  • About vacancies for research assistants/postdoctoral fellowship opportunities and other job opportunities in rare disease research/clinical trials
  • About relevant upcoming clinical trials for our news feed
  • About new and approved clinical care models/guidelines that should be added to, or linked from, the RARE Portal

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