Resource Hub

The Resource Hub (part of My Rare Journey) brings together trusted information and educational materials relating to rare diseases. View the sections below to learn more about the rare disease landscape.

Rare Disease Directory

Comprehensive guides covering causes, symptoms, diagnosis, and treatment options.

Explore

Rare Disease Insights

Expert resources for patients, families, researchers, and clinicians.

Explore

Webinars & Videos

Curated video content from trusted sources.

Explore

Rare Disease Action Plan

Frameworks, legislation, and how to advocate for change.

Explore

Sponsored Educational Content

Educational materials supported by industry funding.

Help us grow the Resource Hub

We are continually updating the resource hub with more materials. If there is something in particular that you would like us to include then please get in touch to let us know!

Get in Touch

Cookie notice

We only use essential cookies to keep the site running, no analytics or tracking. Privacy policy